98 Matching Annotations
  1. Last 7 days
    1. The older brother (hereafter called Patient A)

      Case: Patient A, male, 14 years old at WIL-29 study entry; ethnicity not reported.

      DiseaseAssertion: VWD3. The patient was initially suspected to have VWD2A based on the family history but was reclassified as VWD3 after next-generation sequencing.

      FamilyInfo: Patient A and Patient B are brothers from a consanguineous family. Both parents were diagnosed with VWD. Figure 2 shows both parents as heterozygous and Patient A and Patient B as homozygous for the familial VWF variant. The pedigree also includes another brother affected with VWD whose genetic testing was underway and a sister whose VWD diagnosis and genetic testing were pending.

      ParentalGenotype: Both parents were heterozygous for the familial VWF variant, as shown in Figure 2.

      CasePresentingHPOs: HP:0000421, HP:0030129, HP:0012147 (Epistaxis, Impaired ristocetin cofactor assay activity, Reduced quantity of VWF)

      CaseHPOFreeText: Recurrent spontaneous epistaxis. Historical VWF:RCo 1% and VWF:Ag 10%. VWF:RCo 1 IU/dL at WIL-31 screening. At the month 0 pharmacokinetic visit, pre-injection FVIII 12 IU/dL and VWF:RCo <5 IU/dL; after 60 IU/kg wilate, virtually no rise in VWF activity (maximum VWF:RCo 9 IU/dL, in vivo recovery 0.07 kg/dL). VWF inhibitors were confirmed present at WIL-31 study entry, and the patient remained inhibitor-positive at the 12-month visit.

      CaseNotHPOs: NA

      CaseNotHPOFreeText: No anaphylactic reactions or severe treatment-related adverse events were reported.

      CasePreviousTesting: Diagnosed with VWD shortly after birth and initially suspected to have VWD2A based on family history. Historical VWF activity and antigen testing, and subsequent pharmacokinetic and VWF inhibitor testing, were performed. No earlier molecular genetic testing was reported.

      GenotypingMethod: Next-generation sequencing performed in Bonn, Germany. Additional technical details regarding the sequencing assay or panel were not provided.

      Gene: VWF

      Variant: c.4094T>C p.Leu1365Pro, homozygous

      HGVS: NM_000552.5:c.4094T>C (p.Leu1365Pro)

      ClinVar: 2438545

      CAID: NA

      gnomAD: Absent (not reported in gnomAD; 0/251040 control chromosomes)

    2. younger brother (Patient B)

      Case: Patient B, male, 11 years old at WIL-29 study entry; ethnicity not reported.

      DiseaseAssertion: VWD3. The patient was initially suspected to have VWD2A based on the family history but was reclassified as VWD3 after next-generation sequencing.

      FamilyInfo: Patient B and Patient A are brothers from a consanguineous family. Both parents were diagnosed with VWD. Figure 2 shows both parents as heterozygous and Patient A and Patient B as homozygous for the familial VWF variant. The pedigree also includes another brother affected with VWD whose genetic testing was underway and a sister whose VWD diagnosis and genetic testing were pending.

      ParentalGenotype: Both parents were heterozygous for the familial VWF variant, as shown in Figure 2.

      CasePresentingHPOs: HP:0000421, HP:0030129 (Epistaxis, Impaired ristocetin cofactor assay activity)

      CaseHPOFreeText: Recurrent spontaneous epistaxis. Historical VWF:RCo 1%; historical VWF:Ag not measured. VWF:RCo 1 IU/dL at WIL-31 screening. At the month 0 pharmacokinetic visit, pre-injection FVIII 16 IU/dL and VWF:RCo <5 IU/dL; after 60 IU/kg wilate, maximum VWF:RCo 65 IU/dL and in vivo recovery 1.02 kg/dL. VWF inhibitors were confirmed present at WIL-31 study entry; no VWF inhibitor was detectable at the 12-month visit.

      CaseNotHPOs: NA

      CaseNotHPOFreeText: No anaphylactic reactions or severe treatment-related adverse events were reported.

      CasePreviousTesting: Diagnosed with VWD shortly after birth and initially suspected to have VWD2A based on family history. Historical VWF activity testing, and subsequent pharmacokinetic and VWF inhibitor testing, were performed. Historical VWF antigen was not measured. No earlier molecular genetic testing was reported.

      GenotypingMethod: Next-generation sequencing performed in Bonn, Germany. Additional technical details regarding the sequencing assay or panel were not provided.

      Gene: VWF

      Variant: c.4094T>C p.Leu1365Pro, homozygous

      HGVS: NM_000552.5:c.4094T>C (p.Leu1365Pro)

      ClinVar: 2438545

      CAID: NA

      gnomAD: Absent (not reported in gnomAD; 0/251040 control chromosomes)

    1. We referred a small child for evaluation of thrombocytopenia and a tendency to bruise and bleed from his oral mucous membranes.

      Case: Male, described as "a small child"; exact age not stated. Born at 26 weeks' gestation (extreme prematurity) by C-section for suspected placental abruption/preterm labor; perinatal course complicated by mild bronchopulmonary dysplasia and retinopathy of prematurity. DiseaseAssertion: Type 2B VWD, based on reduced VWF:RCo/Ag ratio (<0.7), absence of high- and intermediate-molecular-weight VWF multimers, and increased binding of patient VWF to formalin-fixed normal platelets at low ristocetin concentration (the gain-of-function assay that distinguishes Type 2B from Type 2A or platelet-type VWD). FamilyInfo: NA — no relatives' bleeding history or genotype reported for this patient. ParentalGenotype(s): NA (not tested/not reported) CasePresentingHPOs: HP:0001873 (Thrombocytopenia; platelet counts ranged 5,000-30,000/µL), HP:0012147 (Reduced quantity of VWF; VWF:Ag 54 then 26 IU/dL on repeat testing, nv 45-170 / 50-240), HP:0030129 (Impaired VWF:RCo; 24 then <10 IU/dL, nv >50 / 54-279), HP:0030132 (Absence of large VWF multimers — both high- and intermediate-weight multimers absent on electrophoresis) CaseHPOFreeText: Numerous purpura and petechiae on face, limbs, and trunk; easy bruising and bleeding from oral mucous membranes (no matching HPO code in the approved list); FVIII activity low-normal to reduced (63 then 27 IU/dL, nv 60-200 / 60-195); circulating platelet agglutinates seen on peripheral blood smear; bone marrow aspirate showed large platelet clumps and megakaryocyte nuclei surrounded by halos of clumped platelets — the paper's key finding, suggesting platelet agglutination occurs within the bone marrow itself, not only peripherally; increased binding of patient VWF to formalin-fixed normal platelets specifically at low ristocetin concentration (gain-of-function finding diagnostic for Type 2B, distinct from the reduced standard-dose VWF:RCo activity above). CaseNOTHPOs: NA CaseNOTHPOFreeText: No hepatosplenomegaly, no orthopedic abnormalities on exam; no schistocytes noted on peripheral smear (argues against a microangiopathic process). CasePreviousTesting: Targeted sequencing of VWF exon 28 specifically, clinically directed given the suspected Type 2B phenotype (Type 2B-causing mutations characteristically cluster in exon 28). Not genome-wide, not full VWF gene sequencing. GenotypingMethod: Gene sequencing of VWF exon 28 (specific sequencing platform not stated in the paper). PreviouslyPublished: PMID 15231945 (Christensen RD, Sola MC, Rimsza LM, et al. "Pseudothrombocytopenia in a preterm neonate." Pediatrics. 2004;114:273-275) — same patient, reported before the VWD diagnosis was established. Gene: VWF Variant: Heterozygous missense c.3923G>C, exon 28, p.Arg1308Pro. Same mutation previously reported in a different, unrelated family (Nurden et al. 2006, Blood, PMID 16720832) with abnormal megakaryocyte platelet release in CD34+ cell culture; this report extends that finding by showing the abnormality occurs in vivo in the bone marrow in a patient with this genotype. HGVS: NM_000552.5:c.3923G>C (p.Arg1308Pro). Paper states this directly ("G to C mutation at base 3923... arginine 1308 with proline"); also reports the older mature-protein numbering, R545P (offset of 763 residues, consistent with the length of the VWF signal peptide + propeptide). I independently corroborated the codon position: nt 3922-3924 = codon 1308, matching a real, independently confirmed ClinVar entry at the same codon for a different substitution (c.3922C>T, p.Arg1308Cys). ClinVarID: 100304 (VCV000100304.2) CAID: NA gnomAD: NA

  2. Oct 2026
    1. A 19-year-old woman was diagnosed with a reduced coagulation factor VIII activity of 30% after bleeding complications from wisdom tooth surgery

      Case: Female, 19 y.o., ethnicity unknown.

      DiseaseAssertion: VWD2N

      FamilyInfo: Proband has one older symptomatic sister who shares an identical compound heterozygous genotype, presenting with a mild bleeding tendency, reduced FVIII activity (20-30%), and severely reduced FVIII binding (<2%). The family features one younger unaffected sister who tested negative for both variants, and an unaffected carrier mother. Both parents had normal factor VIII, and there was no male relative with reduced factor VIII or bleeding symptoms.

      ParentalGenotype(s): Mother is heterozygous for the c.2561G>A (p.R854Q) variant, negative for the c.2402G>A (p.S801N) variant, and has normal baseline factor VIII levels, confirming the sisters' variants are in trans. Father unavailable/not tested.

      CasePresentingHPOs: HP:0004846 (Prolonged bleeding after surgery), HP:0003645 (Prolonged partial thromboplastin time).

      CaseHPOFreeText: Index patient experienced bleeding complications following wisdom tooth surgery. Factor VIII binding activity is reduced at 32%. Reduced coagulation factor VIII activity (30%). Prolonged activated partial thromboplastin time (aPTT) of 37 seconds.

      CaseNOTHPOs: HP:0001873 (Thrombocytopenia), HP:0012147 (Reduced quantity of von Willebrand factor), HP:0030130 (Impaired von Willebrand factor collagen binding activity).

      CaseNOTHPOFreeText: Normal vWF antigen (vWF:Ag) levels (101%), normal vWF activity (116%), normal vWF-collagen-binding activity (104%), normal vWF multimer distribution structures, normal hemoglobin level (128 g/L), and normal Prothrombin Time (PT/QUICK) of 83%.

      CasePreviousTesting: Siblings did not carry any known mutations in the F8 gene or the LMAN1 and MCFD2 genes (which encode for endoplasmic reticulum carrier proteins of coagulation factors V and VIII).

      GenotypingMethod: Direct sequence analysis of VWF exons 18-20.

      PreviouslyPublished: NA.

      Gene: VWF

      HGNCID: HGNC:12726

      Variant: Heterozygous c.2561G>A (p.R854Q) and heterozygous c.2402G>A (p.S801N).

      HGVS: (1) NM_000552.5:c.2561G>A (p.Arg854Gln) (2) NM_000552.5:c.2402G>A (p.Ser801Asn)

      ClinVarID: (1) 296 (2) NA

      CAID: (1) NA (2) CA383522023

      gnomAD: (1) MAF of 0.005974 in the European (non-Finnish) population https://gnomad.broadinstitute.org/variant/12-6034812-C-T?dataset=gnomad_r4

      (2) MAF of 0.00001098 in the South Asian population https://gnomad.broadinstitute.org/variant/12-6044331-C-T?dataset=gnomad_r4

    1. Case: Row 17 in Supplemental Table 1. Found in 2 patients in the same family.

      DiseaseAssertion: type 1 VWD

      FamilyInfo:

      ParentalGenotype(s):

      CasePresentingHPOs:

      CaseHPOFreeRext: FVIII:C/VWF:Ag = 2.3 (1.7-3.2); VWFpp/VWF:Ag = 3.0 (2.9-3.2)

      CaseNOTHPOs:

      CaseNOTHPOFreeText:

      CasePreviousTesting:

      GenotypingMethod: Genetic analysis was performed at the laboratory of hematology of the Radboud University Medical Center in Nijmegen. Ion semiconductor sequencing (Ion-Torrent) was used to analyze the VWF gene from peripheral blood obtained in EDTA tubes or from saliva samples. The 52 exons of VWF gene were analyzed including ±20 bp exon-intron boundaries. If no VWF gene variant was detected, multiplex ligation-dependent probe amplification (MLPA) analysis was performed to find large deletions or duplications. Thus, MLPA was performed in 183 patients (46.9%). All variants were confirmed with Sanger sequencing.

      PreviouslyPublished:

      Gene: VWF

      Variant: 2435delC P812R fs*31

      HGVS: VWF:c.2435del p.Pro812Argfs*31

      ClinVarID: 303

      CAID:

      gnomAD: 0.00007187 (116 in 1613916) no homozygotes https://gnomad.broadinstitute.org/variant/12-6044297-CG-C?dataset=gnomad_r4

    1. 35 Q

      Case: Patient 35, Family Q (Table 1.), F/42, Afro-Caribbean

      DiseaseAssertion: VWD2A (IIE)

      FamilyInfo: NA

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT = 4, FVIII:C (IU/dL) = 24, VWF:Ag (IU/dL) = 25, VWF:Act (IU/dL) = 14

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood group O+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.1530G > A, p.(Val510 =) p.

      HGVS: NM_000552.5:c.1530G>A (p.Val510=)

      ClinVarID:

      CAID: CA6403368

      gnomAD: MAF of 0.00002198 (2/91004 alleles) in South Asian population https://gnomad.broadinstitute.org/variant/chr12-6062957-C-T?dataset=gnomad_r4

      Variant: c.1892C > T, p.(Ala631Val)

      HGVS: NM_000552.5:c.1892C>T (p.Ala631Val)

      ClinVarID: 422844

      CAID: CA6403245

      gnomAD: MAF of 0.001908 (137/71810 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6056910-G-A?dataset=gnomad_r4

      Variant: c.2220G > A, p.(Met740Ile)

      HGVS: NM_000552.5:c.2220G>A (p.Met740Ile)

      ClinVarID: 100206

      CAID: CA201316

      gnomAD: MAF of 0.1816 (13626/75022 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6046784-C-T?dataset=gnomad_r4

      Variant: c.2451T > A, p.(His817Gln)

      HGVS: NM_000552.5:c.2451T>A (p.His817Gln)

      ClinVarID: 100224

      CAID: CA228345

      gnomAD: MAF of 0.1150 (8626/75016 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6036483-A-T?dataset=gnomad_r4

      Variant: c.3445T > C, p.(Cys1149Arg)

      HGVS: NM_000552.5:c.3445T>C (p.Cys1149Arg)

      ClinVarID: 309

      CAID: CA228410

      gnomAD: MAF of 0.000003160 (1/316464 alleles) in European (non-Finnish) population https://gnomad.broadinstitute.org/variant/chr12-6022833-A-G?dataset=gnomad_r4

      Variant: c.4414G > C p.(Asp1472His)

      HGVS: NM_000552.5:c.4414G>C (p.Asp1472His)

      ClinVarID: 256679

      CAID: CA6402534

      gnomAD: MAF of 0.5076 (38011/74882 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019004-C-G?dataset=gnomad_r4

      Variant: c.6554G > A, p.(Arg2185Gln)

      HGVS: NM_000552.5:c.6554G>A (p.Arg2185Gln)

      ClinVarID: 100443

      CAID: CA228748

      gnomAD: MAF of 0.1927 (14427/74878 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-5993906-C-T?dataset=gnomad_r4

      Variant: c.8174A > G, p.(Asn2725Ser)

      HGVS: NM_000552.5:c.8174A>G (p.Asn2725Ser)

      ClinVarID:

      CAID: CA232258860

      gnomAD: MAF of 0.00004456 (2/44880 alleles) in East Asian population https://gnomad.broadinstitute.org/variant/chr12-5949865-T-C?dataset=gnomad_r4

    2. 44 U

      Case: Patient 44, Family U (Table 1.), M/15, Afro-Caribbean

      DiseaseAssertion: VWD2M

      FamilyInfo: Patient 43 (M/10, Afro-Caribbean), Patient 46 (M/47, Afro-Caribbean, Patient 47(M/78, Afro-Caribbean) and Patient 48 (M/43, Afro Caribbean) also from Family U. (Table 1.)

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT = 4, FVIII:C (IU/dL) = 48, VWF:Ag (IU/dL) = 25, VWF:Act (IU/dL) = 7

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood group B+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.3943C > T p.(Arg1315Cys)

      HGVS: NM_000552.5:c.3943C>T (p.Arg1315Cys)

      ClinVarID: 100310

      CAID: CA228502

      gnomAD: MAF of 8.476e-7 (1/ 1179850 alleles) in European population https://gnomad.broadinstitute.org/variant/chr12-6019161-A-C?dataset=gnomad_r4

    3. 42 T

      Case: Patient 42, Family T (Table 1.), F/60, Afro-Caribbean

      DiseaseAssertion: VWD2A (IIA)

      FamilyInfo: NA

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT = 8, FVIII:C (IU/dL) = 20, VWF:Ag (IU/dL) = 35, VWF:Act (IU/dL) = 6

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood group O+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.4257T > G p.(His1419Gln)

      HGVS: NM_000552.5:c.4257T>G (p.His1419Gln)

      ClinVarID: 2691691

      CAID: CA6402565

      gnomAD: MAF of 0.0003166 (19/60010 alleles) in Admixed American population https://gnomad.broadinstitute.org/variant/chr12-6019161-A-C?dataset=gnomad_r4

      Variant: c.4414G > C p.(Asp1472His)

      HGVS: NM_000552.5:c.4414G>C (p.Asp1472His)

      ClinVarID: 256679

      CAID: CA6402534

      gnomAD: MAF of 0.5076 (38011/74882 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019004-C-G?dataset=gnomad_r4

      Variant: c.4517C > T p.(Ser1506Leu)

      HGVS: NM_000552.5:c.4517C>T (p.Ser1506Leu)

      ClinVarID: 100369

      CAID: CA228615

      gnomAD: MAF of 0.0001735 (10/57628 alleles) in Admixed American population https://gnomad.broadinstitute.org/variant/chr12-6018901-G-A?dataset=gnomad_r4

    4. 51 Y

      Case: Patient 51, Family Y (Table 1.), F/33, Afro-Caribbean

      DiseaseAssertion: VWD1

      FamilyInfo: NA

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT = 5, FVIII:C (IU/dL) = NA, VWF:Ag (IU/dL) = 30, VWF:Act (IU/dL) = 31

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood group O+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.4751A > G, p.(Tyr1584Cys)

      HGVS: NM_000552.5:c.4751A>G (p.Tyr1584Cys)

      ClinVarID: 310

      CAID: CA114162

      gnomAD: MAF of 0.004105 (483/1179782 alleles) in European/Non-Finnish population https://gnomad.broadinstitute.org/variant/chr12-6018667-T-C?dataset=gnomad_r4

    5. 48 U

      Case: Patient 48, Family U (Table 1.), M/43, Afro-Caribbean

      DiseaseAssertion: VWD2M

      FamilyInfo: Patient 43 (M/10, Afro-Caribbean), Patient 44 (M/15, Afro-Caribbean), Patient 46 (M/47, Afro-Caribbean) and Patient 47 (M/78, Afro Caribbean) also from Family U. (Table 1.)

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT = 4, FVIII:C (IU/dL) = 32, VWF:Ag (IU/dL) = 25, VWF:Act (IU/dL) = 21

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood group AB+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.3943C > T p.(Arg1315Cys)

      HGVS: NM_000552.5:c.3943C>T (p.Arg1315Cys)

      ClinVarID: 100310

      CAID: CA228502

      gnomAD: MAF of 8.476e-7 (1/ 1179850 alleles) in European population https://gnomad.broadinstitute.org/variant/chr12-6019161-A-C?dataset=gnomad_r4

    6. 47 U

      Case: Patient 47, Family U (Table 1.), M/78, Afro-Caribbean

      DiseaseAssertion: VWD2M

      FamilyInfo: Patient 43 (M/10, Afro-Caribbean), Patient 44 (M/15, Afro-Caribbean), Patient 46 (M/47, Afro-Caribbean) and Patient 48 (M/43, Afro Caribbean) also from Family U. (Table 1.)

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT = 4, FVIII:C (IU/dL) = 11, VWF:Ag (IU/dL) = 20, VWF:Act (IU/dL) = 12.6

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood group B+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.3943C > T p.(Arg1315Cys)

      HGVS: NM_000552.5:c.3943C>T (p.Arg1315Cys)

      ClinVarID: 100310

      CAID: CA228502

      gnomAD: MAF of 8.476e-7 (1/ 1179850 alleles) in European population https://gnomad.broadinstitute.org/variant/chr12-6019161-A-C?dataset=gnomad_r4

      Variant: c.4196G > A, p.(Arg1399His)

      HGVS: NM_000552.5:c.4196G>A (p.Arg1399His)

      ClinVarID: 293

      CAID: CA114133

      gnomAD: MAF of 0.01540 (456/29604 alleles) in Ashkenazi Jewish population https://gnomad.broadinstitute.org/variant/chr12-6019222-C-T?dataset=gnomad_r4

    7. 62 M

      Case: Patient 62, Family M (Table 1.), F/42, Afro-Caribbean

      DiseaseAssertion: VWD3

      FamilyInfo: Patient 20 (M/80, Afro-Caribbean) also in Family M. (Table 1.)

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT =32, FVIII:C (IU/dL) = 2, VWF:Ag (IU/dL) = 5, VWF:Act (IU/dL) = 5

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood group O+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.1530G > A, p.(Val510 =)

      HGVS: NM_000552.5:c.1530G>A (p.Val510=)

      ClinVarID:

      CAID: CA6403368

      gnomAD: MAF of 0.00002198 (2/91004 alleles) in South Asian population https://gnomad.broadinstitute.org/variant/chr12-6062957-C-T?dataset=gnomad_r4

      Variant: c.1892C > T, p.(Ala631Val)

      HGVS: NM_000552.5:c.1892C>T (p.Ala631Val)

      ClinVarID: 422844

      CAID: CA6403245

      gnomAD: MAF of 0.001908 (137/71810 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6056910-G-A?dataset=gnomad_r4

      Variant: c.2220G > A, p.(Met740Ile)

      HGVS: NM_000552.5:c.2220G>A (p.Met740Ile)

      ClinVarID: 100206

      CAID: CA201316

      gnomAD: MAF of 0.1816 (13626/75022 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6046784-C-T?dataset=gnomad_r4

      Variant: c.2451T > A, p.(His817Gln)

      HGVS: NM_000552.5:c.2451T>A (p.His817Gln)

      ClinVarID: 100224

      CAID: CA228345

      gnomAD: MAF of 0.1150 (8626/75016 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6036483-A-T?dataset=gnomad_r4

      Variant: c.3445T > C, p.(Cys1149Arg)

      HGVS: NM_000552.5:c.3445T>C (p.Cys1149Arg)

      ClinVarID: 309

      CAID: CA228410

      gnomAD: MAF of 0.000003160 (1/316464 alleles) in European (non-Finnish) population https://gnomad.broadinstitute.org/variant/chr12-6022833-A-G?dataset=gnomad_r4

      Variant: c.4414G > C p.(Asp1472His)

      HGVS: NM_000552.5:c.4414G>C (p.Asp1472His)

      ClinVarID: 256679

      CAID: CA6402534

      gnomAD: MAF of 0.5076 (38011/74882 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019004-C-G?dataset=gnomad_r4

      Variant: c.6554G > A, p.(Arg2185Gln)

      HGVS: NM_000552.5:c.6554G>A (p.Arg2185Gln)

      ClinVarID: 100443

      CAID: CA228748

      gnomAD: MAF of 0.1927 (14427/74878 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-5993906-C-T?dataset=gnomad_r4

      Variant: c.6432dupA, (Pro2145Thrfs*5)

      HGVS: NM_000552.5:c.6432dup (p.Pro2145Thrfs*5)

      ClinVarID:

      CAID: CA603482896

      gnomAD: MAF of 0.00001333 (1/75038 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-5994027-G-GT?dataset=gnomad_r4

    8. 22 I

      Case: Patient 22, Family I (Table 1.), F/67, Afro-Caribbean

      DiseaseAssertion: VWD2A (IIE)

      FamilyInfo: Patient 13 (F/65, Afro-Caribbean), Patient 21 (F/97, Afro-Caribbean), Patient 23 (F/86, Afro-Caribbean), Patient 24 (F/92, Afro-Caribbean), Patient 25 (F/62, Afro-Carribean) also from Family I. (Table 1.)

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT =2, FVIII:C (IU/dL) = 33, VWF:Ag (IU/dL) = 20, VWF:Act (IU/dL) = 17

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood group B+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.1530G > A, p.(Val510 =) p.

      HGVS: NM_000552.5:c.1530G>A (p.Val510=)

      ClinVarID:

      CAID: CA6403368

      gnomAD: MAF of 0.00002198 (2/91004 alleles) in South Asian population https://gnomad.broadinstitute.org/variant/chr12-6062957-C-T?dataset=gnomad_r4

      Variant: c.1892C > T, p.(Ala631Val)

      HGVS: NM_000552.5:c.1892C>T (p.Ala631Val)

      ClinVarID: 422844

      CAID: CA6403245

      gnomAD: MAF of 0.001908 (137/71810 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6056910-G-A?dataset=gnomad_r4

      Variant: c.2220G > A, p.(Met740Ile)

      HGVS: NM_000552.5:c.2220G>A (p.Met740Ile)

      ClinVarID: 100206

      CAID: CA201316

      gnomAD: MAF of 0.1816 (13626/75022 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6046784-C-T?dataset=gnomad_r4

      Variant: c.2451T > A, p.(His817Gln)

      HGVS: NM_000552.5:c.2451T>A (p.His817Gln)

      ClinVarID: 100224

      CAID: CA228345

      gnomAD: MAF of 0.1150 (8626/75016 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6036483-A-T?dataset=gnomad_r4

      Variant: c.3258C > T, p.(Tyr1086 =)

      HGVS: NM_000552.5:c.3258C>T (p.Tyr1086=)

      ClinVarID: 256664

      CAID: CA6402788

      gnomAD: MAF of 0.1284 (9131/71128 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6023752-G-A?dataset=gnomad_r4

      Variant: c.3445T > C, p.(Cys1149Arg)

      HGVS: NM_000552.5:c.3445T>C (p.Cys1149Arg)

      ClinVarID: 309

      CAID: CA228410

      gnomAD: MAF of 0.000003160 (1/316464 alleles) in European (non-Finnish) population https://gnomad.broadinstitute.org/variant/chr12-6022833-A-G?dataset=gnomad_r4

      Variant: c.4414G > C p.(Asp1472His)

      HGVS: NM_000552.5:c.4414G>C (p.Asp1472His)

      ClinVarID: 256679

      CAID: CA6402534

      gnomAD: MAF of 0.5076 (38011/74882 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019004-C-G?dataset=gnomad_r4

      Variant: c.6554G > A, p.(Arg2185Gln)

      HGVS: NM_000552.5:c.6554G>A (p.Arg2185Gln)

      ClinVarID: 100443

      CAID: CA228748

      gnomAD: MAF of 0.1927 (14427/74878 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-5993906-C-T?dataset=gnomad_r4

    9. 46 U

      Case: Patient 46, Family U (Table 1.), M/47, Afro-Caribbean

      DiseaseAssertion: VWD2M

      FamilyInfo: Patient 43 (M/10, Afro-Caribbean), Patient 44 (M/15, Afro-Caribbean), Patient 47(M/78, Afro-Caribbean) and Patient 48 (M/43, Afro Caribbean) also from Family U. (Table 1.)

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT = 11, FVIII:C (IU/dL) = 35.2, VWF:Ag (IU/dL) = 22, VWF:Act (IU/dL) = 8

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood group A+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.3943C > T p.(Arg1315Cys)

      HGVS: NM_000552.5:c.3943C>T (p.Arg1315Cys)

      ClinVarID: 100310

      CAID: CA228502

      gnomAD: MAF of 8.476e-7 (1/ 1179850 alleles) in European population https://gnomad.broadinstitute.org/variant/chr12-6019161-A-C?dataset=gnomad_r4

    10. 43 U

      Case: Patient 43, Family U (Table 1.), M/10, Afro-Caribbean

      DiseaseAssertion: VWD2M

      FamilyInfo: Patient 44 (M/15, Afro-Caribbean), Patient 46 (M/47, Afro-Caribbean, Patient 47(M/78, Afro-Caribbean) and Patient 48 (M/43, Afro Caribbean) also from Family U. (Table 1.)

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT = 0, FVIII:C (IU/dL) = 71, VWF:Ag (IU/dL) = 30, VWF:Act (IU/dL) = 40

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood group B+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.3943C > T p.(Arg1315Cys)

      HGVS: NM_000552.5:c.3943C>T (p.Arg1315Cys)

      ClinVarID: 100310

      CAID: CA228502

      gnomAD: MAF of 8.476e-7 (1/ 1179850 alleles) in European population https://gnomad.broadinstitute.org/variant/chr12-6019161-A-C?dataset=gnomad_r4

      Variant: c.4138A > G, p.(Ile1380Val)

      HGVS: NM_000552.5:c.4138A>G (p.Ile1380Val)

      ClinVarID: 310063

      CAID: CA6402595

      gnomAD: MAF of 0.1184 (8878/74958 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019280-T-C?dataset=gnomad_r4

      Variant: c.4304A > G, p.(Asn1435Ser)

      HGVS: NM_000552.5:c.4304A>G (p.Asn1435Ser)

      ClinVarID: 310062

      CAID: CA6402552

      gnomAD: MAF of 0.1124 (8427/74964 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019114-T-C?dataset=gnomad_r4

      Variant: c.4414G > C p.(Asp1472His)

      HGVS: NM_000552.5:c.4414G>C (p.Asp1472His)

      ClinVarID: 256679

      CAID: CA6402534

      gnomAD: MAF of 0.5076 (38011/74882 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019004-C-G?dataset=gnomad_r4

    11. 37 R

      Case: Patient 37, Family R (Table 1.), M/20, Afro-Caribbean

      DiseaseAssertion: VWD2A (IIE)

      FamilyInfo: Patient 36 (M/22, Afro-Caribbean) and Patient 38 (F/51, Afro-Caribbean) also from Family R. (Table 1.)

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT = 1, FVIII:C (IU/dL) = 23, VWF:Ag (IU/dL) = 10, VWF:Act (IU/dL) = 10

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood group O+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.1530G > A, p.(Val510 =) p.

      HGVS: NM_000552.5:c.1530G>A (p.Val510=)

      ClinVarID:

      CAID: CA6403368

      gnomAD: MAF of 0.00002198 (2/91004 alleles) in South Asian population https://gnomad.broadinstitute.org/variant/chr12-6062957-C-T?dataset=gnomad_r4

      Variant: c.1892C > T, p.(Ala631Val)

      HGVS: NM_000552.5:c.1892C>T (p.Ala631Val)

      ClinVarID: 422844

      CAID: CA6403245

      gnomAD: MAF of 0.001908 (137/71810 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6056910-G-A?dataset=gnomad_r4

      Variant: c.2220G > A, p.(Met740Ile)

      HGVS: NM_000552.5:c.2220G>A (p.Met740Ile)

      ClinVarID: 100206

      CAID: CA201316

      gnomAD: MAF of 0.1816 (13626/75022 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6046784-C-T?dataset=gnomad_r4

      Variant: c.2451T > A, p.(His817Gln)

      HGVS: NM_000552.5:c.2451T>A (p.His817Gln)

      ClinVarID: 100224

      CAID: CA228345

      gnomAD: MAF of 0.1150 (8626/75016 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6036483-A-T?dataset=gnomad_r4

      Variant: c.3445T > C, p.(Cys1149Arg)

      HGVS: NM_000552.5:c.3445T>C (p.Cys1149Arg)

      ClinVarID: 309

      CAID: CA228410

      gnomAD: MAF of 0.000003160 (1/316464 alleles) in European (non-Finnish) population https://gnomad.broadinstitute.org/variant/chr12-6022833-A-G?dataset=gnomad_r4

      Variant: c.4414G > C p.(Asp1472His)

      HGVS: NM_000552.5:c.4414G>C (p.Asp1472His)

      ClinVarID: 256679

      CAID: CA6402534

      gnomAD: MAF of 0.5076 (38011/74882 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019004-C-G?dataset=gnomad_r4

      Variant: c.6554G > A, p.(Arg2185Gln)

      HGVS: NM_000552.5:c.6554G>A (p.Arg2185Gln)

      ClinVarID: 100443

      CAID: CA228748

      gnomAD: MAF of 0.1927 (14427/74878 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-5993906-C-T?dataset=gnomad_r4

    12. 40 S

      Case: Patient 40, Family S (Table 1.), F/38, Afro-Caribbean

      DiseaseAssertion: Indeterminant

      FamilyInfo: Patient 39 (F/76, Afro-Caribbean), Patient 41 (M/63, Afro-Caribbean) and Patient 52 (F/48, Afro Caribbean) also from Family S. (Table 1.)

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT = 0, FVIII:C (IU/dL) = 88, VWF:Ag (IU/dL) = 132, VWF:Act (IU/dL) = 35

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood group B+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.4414G > C p.(Asp1472His)

      HGVS: NM_000552.5:c.4414G>C (p.Asp1472His)

      ClinVarID: 256679

      CAID: CA6402534

      gnomAD: MAF of 0.5076 (38011/74882 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019004-C-G?dataset=gnomad_r4

      Variant: c.4628C > G p.(Ser1543Cys)

      HGVS: NM_000552.5:c.4628C>G (p.Ser1543Cys)

      ClinVarID: 4533008

      CAID: CA383500651

      gnomAD:

    13. 34 P

      Case: Patient 34, Family P (Table 1.), F/67, Afro-Caribbean

      DiseaseAssertion: VWD2A (IIE)/2N

      FamilyInfo: NA

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT = 7, FVIII:C (IU/dL) = 11, VWF:Ag (IU/dL) = 23, VWF:Act (IU/dL) = 19

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood group A+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.1530G > A, p.(Val510 =) p.

      HGVS: NM_000552.5:c.1530G>A (p.Val510=)

      ClinVarID:

      CAID: CA6403368

      gnomAD: MAF of 0.00002198 (2/91004 alleles) in South Asian population https://gnomad.broadinstitute.org/variant/chr12-6062957-C-T?dataset=gnomad_r4

      Variant: c.1892C > T, p.(Ala631Val)

      HGVS: NM_000552.5:c.1892C>T (p.Ala631Val)

      ClinVarID: 422844

      CAID: CA6403245

      gnomAD: MAF of 0.001908 (137/71810 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6056910-G-A?dataset=gnomad_r4

      Variant: c.2220G > A, p.(Met740Ile)

      HGVS: NM_000552.5:c.2220G>A (p.Met740Ile)

      ClinVarID: 100206

      CAID: CA201316

      gnomAD: MAF of 0.1816 (13626/75022 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6046784-C-T?dataset=gnomad_r4

      Variant: c.2451T > A, p.(His817Gln)

      HGVS: NM_000552.5:c.2451T>A (p.His817Gln)

      ClinVarID: 100224

      CAID: CA228345

      gnomAD: MAF of 0.1150 (8626/75016 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6036483-A-T?dataset=gnomad_r4

      Variant: c.2561G>A, p.(Arg854Gln)

      HGVS: NM_000552.5:c.2561G>A (p.Arg854Gln)

      ClinVarID: 296

      CAID: CA114139

      gnomAD: MAF of 0.005974 (17050/1180026 alleles) in European (non-Finnish) population https://gnomad.broadinstitute.org/variant/chr12-6034812-C-T?dataset=gnomad_r4

      Variant: c.3445T > C, p.(Cys1149Arg)

      HGVS: NM_000552.5:c.3445T>C (p.Cys1149Arg)

      ClinVarID: 309

      CAID: CA228410

      gnomAD: MAF of 0.000003160 (1/316464 alleles) in European (non-Finnish) population https://gnomad.broadinstitute.org/variant/chr12-6022833-A-G?dataset=gnomad_r4

      Variant: c.4414G > C p.(Asp1472His)

      HGVS: NM_000552.5:c.4414G>C (p.Asp1472His)

      ClinVarID: 256679

      CAID: CA6402534

      gnomAD: MAF of 0.5076 (38011/74882 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019004-C-G?dataset=gnomad_r4

      Variant: c.6554G > A, p.(Arg2185Gln)

      HGVS: NM_000552.5:c.6554G>A (p.Arg2185Gln)

      ClinVarID: 100443

      CAID: CA228748

      gnomAD: MAF of 0.1927 (14427/74878 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-5993906-C-T?dataset=gnomad_r4

    14. 24 I

      Case: Patient 24, Family I (Table 1.), F/92, Afro-Caribbean

      DiseaseAssertion: VWD2A (IIE)

      FamilyInfo: Patient 13 (F/65, Afro-Caribbean), Patient 21 (F/97, Afro-Caribbean), Patient 22 (F/67, Afro-Caribbean), Patient 23 (F/86, Afro-Caribbean), Patient 25 (F/62, Afro-Carribean) also from Family I. (Table 1.)

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT =3, FVIII:C (IU/dL) = 61, VWF:Ag (IU/dL) = 30, VWF:Act (IU/dL) = 29

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood group B+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.1530G > A, p.(Val510 =) p.

      HGVS: NM_000552.5:c.1530G>A (p.Val510=)

      ClinVarID:

      CAID: CA6403368

      gnomAD: MAF of 0.00002198 (2/91004 alleles) in South Asian population https://gnomad.broadinstitute.org/variant/chr12-6062957-C-T?dataset=gnomad_r4

      Variant: c.1892C > T, p.(Ala631Val)

      HGVS: NM_000552.5:c.1892C>T (p.Ala631Val)

      ClinVarID: 422844

      CAID: CA6403245

      gnomAD: MAF of 0.001908 (137/71810 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6056910-G-A?dataset=gnomad_r4

      Variant: c.2220G > A, p.(Met740Ile)

      HGVS: NM_000552.5:c.2220G>A (p.Met740Ile)

      ClinVarID: 100206

      CAID: CA201316

      gnomAD: MAF of 0.1816 (13626/75022 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6046784-C-T?dataset=gnomad_r4

      Variant: c.2451T > A, p.(His817Gln)

      HGVS: NM_000552.5:c.2451T>A (p.His817Gln)

      ClinVarID: 100224

      CAID: CA228345

      gnomAD: MAF of 0.1150 (8626/75016 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6036483-A-T?dataset=gnomad_r4

      Variant: c.3258C > T, p.(Tyr1086 =)

      HGVS: NM_000552.5:c.3258C>T (p.Tyr1086=)

      ClinVarID: 256664

      CAID: CA6402788

      gnomAD: MAF of 0.1284 (9131/71128 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6023752-G-A?dataset=gnomad_r4

      Variant: c.3445T > C, p.(Cys1149Arg)

      HGVS: NM_000552.5:c.3445T>C (p.Cys1149Arg)

      ClinVarID: 309

      CAID: CA228410

      gnomAD: MAF of 0.000003160 (1/316464 alleles) in European (non-Finnish) population https://gnomad.broadinstitute.org/variant/chr12-6022833-A-G?dataset=gnomad_r4

      Variant: c.4414G > C p.(Asp1472His)

      HGVS: NM_000552.5:c.4414G>C (p.Asp1472His)

      ClinVarID: 256679

      CAID: CA6402534

      gnomAD: MAF of 0.5076 (38011/74882 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019004-C-G?dataset=gnomad_r4

      Variant: c.6554G > A, p.(Arg2185Gln)

      HGVS: NM_000552.5:c.6554G>A (p.Arg2185Gln)

      ClinVarID: 100443

      CAID: CA228748

      gnomAD: MAF of 0.1927 (14427/74878 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-5993906-C-T?dataset=gnomad_r4

    15. 20 M

      Case: Patient 20, Family M (Table 1.), M/80, Afro-Caribbean

      DiseaseAssertion: VWD2A (IIE)

      FamilyInfo: Patient 62 (F/42, Afro-Caribbean) also in Family M. (Table 1.)

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT =10, FVIII:C (IU/dL) = NA, VWF:Ag (IU/dL) = 12, VWF:Act (IU/dL) = 10

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood group O+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.1530G > A, p.(Val510 =) p.

      HGVS: NM_000552.5:c.1530G>A (p.Val510=)

      ClinVarID:

      CAID: CA6403368

      gnomAD: MAF of 0.00002198 (2/91004 alleles) in South Asian population https://gnomad.broadinstitute.org/variant/chr12-6062957-C-T?dataset=gnomad_r4

      Variant: c.1892C > T, p.(Ala631Val)

      HGVS: NM_000552.5:c.1892C>T (p.Ala631Val)

      ClinVarID: 422844

      CAID: CA6403245

      gnomAD: MAF of 0.001908 (137/71810 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6056910-G-A?dataset=gnomad_r4

      Variant: c.2220G > A, p.(Met740Ile)

      HGVS: NM_000552.5:c.2220G>A (p.Met740Ile)

      ClinVarID: 100206

      CAID: CA201316

      gnomAD: MAF of 0.1816 (13626/75022 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6046784-C-T?dataset=gnomad_r4

      Variant: c.2451T > A, p.(His817Gln)

      HGVS: NM_000552.5:c.2451T>A (p.His817Gln)

      ClinVarID: 100224

      CAID: CA228345

      gnomAD: MAF of 0.1150 (8626/75016 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6036483-A-T?dataset=gnomad_r4

      Variant: c.3445T > C, p.(Cys1149Arg)

      HGVS: NM_000552.5:c.3445T>C (p.Cys1149Arg)

      ClinVarID: 309

      CAID: CA228410

      gnomAD: MAF of 0.000003160 (1/316464 alleles) in European (non-Finnish) population https://gnomad.broadinstitute.org/variant/chr12-6022833-A-G?dataset=gnomad_r4

      Variant: c.4414G > C p.(Asp1472His)

      HGVS: NM_000552.5:c.4414G>C (p.Asp1472His)

      ClinVarID: 256679

      CAID: CA6402534

      gnomAD: MAF of 0.5076 (38011/74882 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019004-C-G?dataset=gnomad_r4

      Variant: c.6554G > A, p.(Arg2185Gln

      HGVS: NM_000552.5:c.6554G>A (p.Arg2185Gln)

      ClinVarID: 100443

      CAID: CA228748

      gnomAD: MAF of 0.1927 (14427/74878 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-5993906-C-T?dataset=gnomad_r4

    16. 50 X

      Case: Patient 50, Family X (Table 1.), F/47, Afro-Caribbean

      DiseaseAssertion: VWD1

      FamilyInfo: NA

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT = 10, FVIII:C (IU/dL) = 72, VWF:Ag (IU/dL) = 22, VWF:Act (IU/dL) = 28

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood group O+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.3686T > G, p.(Val1229Gly)

      HGVS: NM_000552.5(:c.3686T>G (p.Val1229Gly)

      ClinVarID: 100274

      CAID: CA228433

      gnomAD: MAF of 0.01604 (1200/74796 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019732-A-C?dataset=gnomad_r4

      Variant: c.3692A > C, p.(Asn1231Thr)

      HGVS: NM_000552.5:c.3692A>C (p.Asn1231Thr)

      ClinVarID: 100275

      CAID: CA228435

      gnomAD: MAF of 0.01203 (900/74802 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/12-6019726-T-G?dataset=gnomad_r4

      Variant: c.4414G > C p.(Asp1472His)

      HGVS: NM_000552.5:c.4414G>C (p.Asp1472His)

      ClinVarID: 256679

      CAID: CA6402534

      gnomAD: MAF of 0.5076 (38011/74882 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019004-C-G?dataset=gnomad_r4

    17. 10 G

      Case: Patient 10, Family G (Table 1.), M/22, Afro-Caribbean

      DiseaseAssertion: VWD2A (IIE)

      FamilyInfo: Patient 16 (F/58, Afro-Caribbean) and Patient 17 (F/79, Afro-Caribbean) also from Family G. (Table 1.)

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT =1, FVIII:C (IU/dL) = 26, VWF:Ag (IU/dL) = 15, VWF:Act (IU/dL) = 4

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood group O+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.1530G > A, p.(Val510 =) p.

      HGVS: NM_000552.5:c.1530G>A (p.Val510=)

      ClinVarID:

      CAID: CA6403368

      gnomAD: MAF of 0.00002198 (2/91004 alleles) in South Asian population https://gnomad.broadinstitute.org/variant/chr12-6062957-C-T?dataset=gnomad_r4

      Variant: c.1892C > T, p.(Ala631Val)

      HGVS: NM_000552.5:c.1892C>T (p.Ala631Val)

      ClinVarID: 422844

      CAID: CA6403245

      gnomAD: MAF of 0.001908 (137/71810 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6056910-G-A?dataset=gnomad_r4

      Variant: c.2220G > A, p.(Met740Ile)

      HGVS: NM_000552.5:c.2220G>A (p.Met740Ile)

      ClinVarID: 100206

      CAID: CA201316

      gnomAD: MAF of 0.1816 (13626/75022 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6046784-C-T?dataset=gnomad_r4

      Variant: c.2451T > A, p.(His817Gln)

      HGVS: NM_000552.5:c.2451T>A (p.His817Gln)

      ClinVarID: 100224

      CAID: CA228345

      gnomAD: MAF of 0.1150 (8626/75016 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6036483-A-T?dataset=gnomad_r4

      Variant: c.3445T > C, p.(Cys1149Arg)

      HGVS: NM_000552.5:c.3445T>C (p.Cys1149Arg)

      ClinVarID: 309

      CAID: CA228410

      gnomAD: MAF of 0.000003160 (1/316464 alleles) in European (non-Finnish) population https://gnomad.broadinstitute.org/variant/chr12-6022833-A-G?dataset=gnomad_r4

      Variant: c.4414G > C p.(Asp1472His)

      HGVS: NM_000552.5:c.4414G>C (p.Asp1472His)

      ClinVarID: 256679

      CAID: CA6402534

      gnomAD: MAF of 0.5076 (38011/74882 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019004-C-G?dataset=gnomad_r4

      Variant: c.6554G > A, p.(Arg2185Gln)

      HGVS: NM_000552.5:c.6554G>A (p.Arg2185Gln)

      ClinVarID: 100443

      CAID: CA228748

      gnomAD: MAF of 0.1927 (14427/74878 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-5993906-C-T?dataset=gnomad_r4

    18. 36 R

      Case: Patient 36, Family R (Table 1.), M/22, Afro-Caribbean

      DiseaseAssertion: VWD2A (IIE)

      FamilyInfo: Patient 37 (M/20, Afro-Caribbean) and Patient 38 (F/51, Afro-Caribbean) also from Family R. (Table 1.)

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT = 1, FVIII:C (IU/dL) = 28, VWF:Ag (IU/dL) = 15, VWF:Act (IU/dL) = 10

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood group O+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.1530G > A, p.(Val510 =) p.

      HGVS: NM_000552.5:c.1530G>A (p.Val510=)

      ClinVarID:

      CAID: CA6403368

      gnomAD: MAF of 0.00002198 (2/91004 alleles) in South Asian population https://gnomad.broadinstitute.org/variant/chr12-6062957-C-T?dataset=gnomad_r4

      Variant: c.1892C > T, p.(Ala631Val)

      HGVS: NM_000552.5:c.1892C>T (p.Ala631Val)

      ClinVarID: 422844

      CAID: CA6403245

      gnomAD: MAF of 0.001908 (137/71810 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6056910-G-A?dataset=gnomad_r4

      Variant: c.2220G > A, p.(Met740Ile)

      HGVS: NM_000552.5:c.2220G>A (p.Met740Ile)

      ClinVarID: 100206

      CAID: CA201316

      gnomAD: MAF of 0.1816 (13626/75022 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6046784-C-T?dataset=gnomad_r4

      Variant: c.2451T > A, p.(His817Gln)

      HGVS: NM_000552.5:c.2451T>A (p.His817Gln)

      ClinVarID: 100224

      CAID: CA228345

      gnomAD: MAF of 0.1150 (8626/75016 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6036483-A-T?dataset=gnomad_r4

      Variant: c.3445T > C, p.(Cys1149Arg)

      HGVS: NM_000552.5:c.3445T>C (p.Cys1149Arg)

      ClinVarID: 309

      CAID: CA228410

      gnomAD: MAF of 0.000003160 (1/316464 alleles) in European (non-Finnish) population https://gnomad.broadinstitute.org/variant/chr12-6022833-A-G?dataset=gnomad_r4

      Variant: c.4414G > C p.(Asp1472His)

      HGVS: NM_000552.5:c.4414G>C (p.Asp1472His)

      ClinVarID: 256679

      CAID: CA6402534

      gnomAD: MAF of 0.5076 (38011/74882 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019004-C-G?dataset=gnomad_r4

      Variant: c.6554G > A, p.(Arg2185Gln)

      HGVS: NM_000552.5:c.6554G>A (p.Arg2185Gln)

      ClinVarID: 100443

      CAID: CA228748

      gnomAD: MAF of 0.1927 (14427/74878 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-5993906-C-T?dataset=gnomad_r4

    19. 33 K

      Case: Patient 33, Family K (Table 1.), F/49, Afro-Caribbean

      DiseaseAssertion: VWD2A (IIE)

      FamilyInfo: Patient 18 (F/53, Afro-Caribbean), Patient 29 (F/33, Afro-Caribbean), Patient 32 (F/17, Afro-Caribbean) also from Family K. (Table 1.)

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT =17, FVIII:C (IU/dL) = 3, VWF:Ag (IU/dL) = 3, VWF:Act (IU/dL) = 7

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood type A+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.1661del, p.(Lys554Serfs*23)

      HGVS: NM_000552.5:c.1661del (p.Lys554Serfs*23)

      ClinVarID:

      CAID: CA2617232671

      gnomAD: MAF is 0.00001332 (1/75048 alleles) in African/African/American population https://gnomad.broadinstitute.org/variant/chr12-6057916-CT-C?dataset=gnomad_r4

      Variant: c.2365A > G, p.(Thr789Ala)

      HGVS: NM_000552.5:c.2365A>G (p.Thr789Ala)

      ClinVarID: 256659

      CAID: CA6403090

      gnomAD: MAF of 0.5793 (43409/74928 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6044368-T-C?dataset=gnomad_r4

      Variant: c.2385T > C, p.(Tyr795 =)

      HGVS: NM_000552.5:c.2385T>C (p.Tyr795=)

      ClinVarID: 256660

      CAID: CA6403087

      gnomAD: MAF of 0.5788 (43385/74952 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6044348-A-G?dataset=gnomad_r4

      Variant: c.2880G > A, p.(Arg960 =)

      HGVS: NM_000552.5:c.2880G>A (p.Arg960=)

      ClinVarID: 195657

      CAID: CA201877

      gnomAD: MAF of 0.3169 (23737/74896 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6029429-C-T?dataset=gnomad_r4

      Variant: c.3505T > A, p.(Cys1169Ser)

      HGVS: NM_000552.5:c.3505T>A (p.Cys1169Ser)

      ClinVarID:

      CAID: CA383511219

      gnomAD:

      Variant: c.4138A > G, p.(Ile1380Val)

      HGVS: NM_000552.5:c.4138A>G (p.Ile1380Val)

      ClinVarID: 310063

      CAID: CA6402595

      gnomAD: MAF of 0.1184 (8878/74958 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019280-T-C?dataset=gnomad_r4

      Variant: c.4304A > G, p.(Asn1435Ser)

      HGVS: NM_000552.5:c.4304A>G (p.Asn1435Ser)

      ClinVarID: 310062

      CAID: CA6402552

      gnomAD: MAF of 0.1124 (8427/74964 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019114-T-C?dataset=gnomad_r4

      Variant: c.4414G > C p.(Asp1472His)

      HGVS: NM_000552.5:c.4414G>C (p.Asp1472His)

      ClinVarID: 256679

      CAID: CA6402534

      gnomAD: MAF of 0.5076 (38011/74882 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019004-C-G?dataset=gnomad_r4

      Variant: c.6554G > A, p.(Arg2185Gln)

      HGVS: NM_000552.5:c.6554G>A (p.Arg2185Gln)

      ClinVarID: 100443

      CAID: CA228748

      gnomAD: MAF of 0.1927 (14427/74878 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-5993906-C-T?dataset=gnomad_r4

    20. 29 K

      Case: Patient 29, Family K (Table 1.), F/33, Afro-Caribbean

      DiseaseAssertion: VWD2A (IIE)

      FamilyInfo: Patient 18 (F/53, Afro-Caribbean), Patient 32 (F/17, Afro-Caribbean), Patient 33 (F/49, Afro-Caribbean) also from Family K. (Table 1.)

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT =13, FVIII:C (IU/dL) = 75, VWF:Ag (IU/dL) = 25, VWF:Act (IU/dL) = 18

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood type O+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.3505T > A, p.(Cys1169Ser)

      HGVS: NM_000552.5:c.3505T>A (p.Cys1169Ser)

      ClinVarID:

      CAID: CA383511219

      gnomAD:

      Variant: c.4138A > G, p.(Ile1380Val)

      HGVS: NM_000552.5:c.4138A>G (p.Ile1380Val)

      ClinVarID: 310063

      CAID: CA6402595

      gnomAD: MAF of 0.1184 (8878/74958 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019280-T-C?dataset=gnomad_r4

      Variant: c.4304A > G, p.(Asn1435Ser)

      HGVS: NM_000552.5:c.4304A>G (p.Asn1435Ser)

      ClinVarID: 310062

      CAID: CA6402552

      gnomAD: MAF of 0.1124 (8427/74964 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019114-T-C?dataset=gnomad_r4

      Variant: c.4414G > C p.(Asp1472His)

      HGVS: NM_000552.5:c.4414G>C (p.Asp1472His)

      ClinVarID: 256679

      CAID: CA6402534

      gnomAD: MAF of 0.5076 (38011/74882 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019004-C-G?dataset=gnomad_r4

    21. 31 O

      Case: Patient 31, Family O (Table 1.), F/73, Afro-Caribbean

      DiseaseAssertion: VWD2A (IIE)

      FamilyInfo: Patient 30 (M/42, Afro-Caribbean) also from Family O. (Table 1.)

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT = 2, FVIII:C (IU/dL) = 31, VWF:Ag (IU/dL) = 20, VWF:Act (IU/dL) = 22

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood group O+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.1530G > A, p.(Val510 =) p.

      HGVS: NM_000552.5:c.1530G>A (p.Val510=)

      ClinVarID:

      CAID: CA6403368

      gnomAD: MAF of 0.00002198 (2/91004 alleles) in South Asian population https://gnomad.broadinstitute.org/variant/chr12-6062957-C-T?dataset=gnomad_r4

      Variant: c.1892C > T, p.(Ala631Val)

      HGVS: NM_000552.5:c.1892C>T (p.Ala631Val)

      ClinVarID: 422844

      CAID: CA6403245

      gnomAD: MAF of 0.001908 (137/71810 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6056910-G-A?dataset=gnomad_r4

      Variant: c.2220G > A, p.(Met740Ile)

      HGVS: NM_000552.5:c.2220G>A (p.Met740Ile)

      ClinVarID: 100206

      CAID: CA201316

      gnomAD: MAF of 0.1816 (13626/75022 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6046784-C-T?dataset=gnomad_r4

      Variant: c.2451T > A, p.(His817Gln)

      HGVS: NM_000552.5:c.2451T>A (p.His817Gln)

      ClinVarID: 100224

      CAID: CA228345

      gnomAD: MAF of 0.1150 (8626/75016 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6036483-A-T?dataset=gnomad_r4

      Variant: c.3445T > C, p.(Cys1149Arg)

      HGVS: NM_000552.5:c.3445T>C (p.Cys1149Arg)

      ClinVarID: 309

      CAID: CA228410

      gnomAD: MAF of 0.000003160 (1/316464 alleles) in European (non-Finnish) population https://gnomad.broadinstitute.org/variant/chr12-6022833-A-G?dataset=gnomad_r4

      Variant: c.4414G > C p.(Asp1472His)

      HGVS: NM_000552.5:c.4414G>C (p.Asp1472His)

      ClinVarID: 256679

      CAID: CA6402534

      gnomAD: MAF of 0.5076 (38011/74882 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019004-C-G?dataset=gnomad_r4

      Variant: c.6554G > A, p.(Arg2185Gln)

      HGVS: NM_000552.5:c.6554G>A (p.Arg2185Gln)

      ClinVarID: 100443

      CAID: CA228748

      gnomAD: MAF of 0.1927 (14427/74878 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-5993906-C-T?dataset=gnomad_r4

    22. 49 W

      Case: Patient 49, Family W (Table 1.), F/57, Afro-Caribbean

      DiseaseAssertion: VWD2M

      FamilyInfo: NA

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT = NA, FVIII:C (IU/dL) = 57, VWF:Ag (IU/dL) = 50, VWF:Act (IU/dL) = 29

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood group A+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.4315G > A, p.(Val1439Met)

      HGVS: NM_000552.5:c.4315G>A (p.Val1439Met)

      ClinVarID: 1334625

      CAID: CA6402550

      gnomAD: MAF of 0.005146 (386/75012 alleles) in African American population https://gnomad.broadinstitute.org/variant/chr12-6019103-C-T?dataset=gnomad_r4

      Variant: c.4414G > C p.(Asp1472His)

      HGVS: NM_000552.5:c.4414G>C (p.Asp1472His)

      ClinVarID: 256679

      CAID: CA6402534

      gnomAD: MAF of 0.5076 (38011/74882 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019004-C-G?dataset=gnomad_r4

    23. 18 K

      Case: Patient 18, Family K (Table 1.), F/53, Afro-Caribbean

      DiseaseAssertion: VWD2A (IIE)

      FamilyInfo: Patient 29 (F/33, Afro-Caribbean), Patient 32 (F/17, Afro-Caribbean), Patient 33 (F/49, Afro-Caribbean) also from Family K. (Table 1.)

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT =27, FVIII:C (IU/dL) = 19, VWF:Ag (IU/dL) = 16, VWF:Act (IU/dL) = 4

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood type A+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.1661del, p.(Lys554Serfs*23)

      HGVS: NM_000552.5:c.1661del (p.Lys554Serfs*23)

      ClinVarID:

      CAID: CA2617232671

      gnomAD: MAF is 0.00001332 (1/75048 alleles) in African/African/American population https://gnomad.broadinstitute.org/variant/chr12-6057916-CT-C?dataset=gnomad_r4

      Variant: c.2365A > G, p.(Thr789Ala)

      HGVS: NM_000552.5:c.2365A>G (p.Thr789Ala)

      ClinVarID: 256659

      CAID: CA6403090

      gnomAD: MAF of 0.5793 (43409/74928 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6044368-T-C?dataset=gnomad_r4

      Variant: c.2385T > C, p.(Tyr795 =)

      HGVS: NM_000552.5:c.2385T>C (p.Tyr795=)

      ClinVarID: 256660

      CAID: CA6403087

      gnomAD: MAF of 0.5788 (43385/74952 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6044348-A-G?dataset=gnomad_r4

      Variant: c.2880G > A, p.(Arg960 =)

      HGVS: NM_000552.5:c.2880G>A (p.Arg960=)

      ClinVarID: 195657

      CAID: CA201877

      gnomAD: MAF of 0.3169 (23737/74896 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6029429-C-T?dataset=gnomad_r4

      Variant: c.3505T > A, p.(Cys1169Ser)

      HGVS: NM_000552.5:c.3505T>A (p.Cys1169Ser)

      ClinVarID:

      CAID: CA383511219

      gnomAD:

      Variant: c.4414G > C p.(Asp1472His)

      HGVS: NM_000552.5:c.4414G>C (p.Asp1472His)

      ClinVarID: 256679

      CAID: CA6402534

      gnomAD: MAF of 0.5076 (38011/74882 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019004-C-G?dataset=gnomad_r4

      Variant: c.6554G > A, p.(Arg2185Gln)

      HGVS: NM_000552.5:c.6554G>A (p.Arg2185Gln)

      ClinVarID: 100443

      CAID: CA228748

      gnomAD: MAF of 0.1927 (14427/74878 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-5993906-C-T?dataset=gnomad_r4

    24. 23 I

      Case: Patient 23, Family I (Table 1.), F/86, Afro-Caribbean

      DiseaseAssertion: VWD2A (IIE)

      FamilyInfo: Patient 13 (F/65, Afro-Caribbean), Patient 21 (F/97, Afro-Caribbean), Patient 22 (F/67, Afro-Caribbean), Patient 24 (F/92, Afro-Caribbean), Patient 25 (F/62, Afro-Carribean) also from Family I. (Table 1.)

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT =16, FVIII:C (IU/dL) = 24, VWF:Ag (IU/dL) = 15, VWF:Act (IU/dL) = 14

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood group O+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.1530G > A, p.(Val510 =) p.

      HGVS: NM_000552.5:c.1530G>A (p.Val510=)

      ClinVarID:

      CAID: CA6403368

      gnomAD: MAF of 0.00002198 (2/91004 alleles) in South Asian population https://gnomad.broadinstitute.org/variant/chr12-6062957-C-T?dataset=gnomad_r4

      Variant: c.1892C > T, p.(Ala631Val)

      HGVS: NM_000552.5:c.1892C>T (p.Ala631Val)

      ClinVarID: 422844

      CAID: CA6403245

      gnomAD: MAF of 0.001908 (137/71810 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6056910-G-A?dataset=gnomad_r4

      Variant: c.2220G > A, p.(Met740Ile)

      HGVS: NM_000552.5:c.2220G>A (p.Met740Ile)

      ClinVarID: 100206

      CAID: CA201316

      gnomAD: MAF of 0.1816 (13626/75022 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6046784-C-T?dataset=gnomad_r4

      Variant: c.2451T > A, p.(His817Gln)

      HGVS: NM_000552.5:c.2451T>A (p.His817Gln)

      ClinVarID: 100224

      CAID: CA228345

      gnomAD: MAF of 0.1150 (8626/75016 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6036483-A-T?dataset=gnomad_r4

      Variant: c.3258C > T, p.(Tyr1086 =)

      HGVS: NM_000552.5:c.3258C>T (p.Tyr1086=)

      ClinVarID: 256664

      CAID: CA6402788

      gnomAD: MAF of 0.1284 (9131/71128 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6023752-G-A?dataset=gnomad_r4

      Variant: c.3445T > C, p.(Cys1149Arg)

      HGVS: NM_000552.5:c.3445T>C (p.Cys1149Arg)

      ClinVarID: 309

      CAID: CA228410

      gnomAD: MAF of 0.000003160 (1/316464 alleles) in European (non-Finnish) population https://gnomad.broadinstitute.org/variant/chr12-6022833-A-G?dataset=gnomad_r4

      Variant: c.4414G > C p.(Asp1472His)

      HGVS: NM_000552.5:c.4414G>C (p.Asp1472His)

      ClinVarID: 256679

      CAID: CA6402534

      gnomAD: MAF of 0.5076 (38011/74882 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019004-C-G?dataset=gnomad_r4

      Variant: c.6554G > A, p.(Arg2185Gln)

      HGVS: NM_000552.5:c.6554G>A (p.Arg2185Gln)

      ClinVarID: 100443

      CAID: CA228748

      gnomAD: MAF of 0.1927 (14427/74878 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-5993906-C-T?dataset=gnomad_r4

    25. 41 S

      Case: Patient 41, Family S (Table 1.), M/63, Afro-Caribbean

      DiseaseAssertion: Indeterminant

      FamilyInfo: Patient 39 (F/76, Afro-Caribbean), Patient 40 (F/38, Afro-Caribbean)and Patient 52 (F/48, Afro Caribbean) also from Family S. (Table 1.)

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT = 0, FVIII:C (IU/dL) = 100, VWF:Ag (IU/dL) = 92, VWF:Act (IU/dL) = 36

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood group O+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.4138A > G, p.(Ile1380Val)

      HGVS: NM_000552.5:c.4138A>G (p.Ile1380Val)

      ClinVarID: 310063

      CAID: CA6402595

      gnomAD: MAF of 0.1184 (8878/74958 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019280-T-C?dataset=gnomad_r4

      Variant: c.4304A > G, p.(Asn1435Ser)

      HGVS: NM_000552.5:c.4304A>G (p.Asn1435Ser)

      ClinVarID: 310062

      CAID: CA6402552

      gnomAD: MAF of 0.1124 (8427/74964 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019114-T-C?dataset=gnomad_r4

      Variant: c.4414G > C p.(Asp1472His)

      HGVS: NM_000552.5:c.4414G>C (p.Asp1472His)

      ClinVarID: 256679

      CAID: CA6402534

      gnomAD: MAF of 0.5076 (38011/74882 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019004-C-G?dataset=gnomad_r4

      Variant: c.4628C > G p.(Ser1543Cys)

      HGVS: NM_000552.5:c.4628C>G (p.Ser1543Cys)

      ClinVarID: 4533008

      CAID: CA383500651

      gnomAD:

    26. 28 F

      Case: Patient 28, Family F (Table 1.), F/55, Afro-Caribbean

      DiseaseAssertion: VWD2A (IIE)

      FamilyInfo: Patient 8 (M/86, Afro-Caribbean) and Patient 9 (F/76, Afro-Caribbean) also from Family F. (Table 1.)

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT = 6, FVIII:C (IU/dL) = 112, VWF:Ag (IU/dL) = 10, VWF:Act (IU/dL) = 14

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood group A+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.1530G > A, p.(Val510 =) p.

      HGVS: NM_000552.5:c.1530G>A (p.Val510=)

      ClinVarID:

      CAID: CA6403368

      gnomAD: MAF of 0.00002198 (2/91004 alleles) in South Asian population https://gnomad.broadinstitute.org/variant/chr12-6062957-C-T?dataset=gnomad_r4

      Variant: c.1892C > T, p.(Ala631Val)

      HGVS: NM_000552.5:c.1892C>T (p.Ala631Val)

      ClinVarID: 422844

      CAID: CA6403245

      gnomAD: MAF of 0.001908 (137/71810 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6056910-G-A?dataset=gnomad_r4

      Variant: c.2220G > A, p.(Met740Ile)

      HGVS: NM_000552.5:c.2220G>A (p.Met740Ile)

      ClinVarID: 100206

      CAID: CA201316

      gnomAD: MAF of 0.1816 (13626/75022 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6046784-C-T?dataset=gnomad_r4

      Variant: c.2451T > A, p.(His817Gln)

      HGVS: NM_000552.5:c.2451T>A (p.His817Gln)

      ClinVarID: 100224

      CAID: CA228345

      gnomAD: MAF of 0.1150 (8626/75016 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6036483-A-T?dataset=gnomad_r4

      Variant: c.3426T > C, p.(Cys1142 =)

      HGVS: NM_000552.5:c.3426T>C (p.Cys1142=)

      ClinVarID: 256668

      CAID: CA6402757

      gnomAD: MAF of 0.2077 (7935/38206 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6022852-A-G?dataset=gnomad_r4

      Variant: c.3445T > C, p.(Cys1149Arg)

      HGVS: NM_000552.5:c.3445T>C (p.Cys1149Arg)

      ClinVarID: 309

      CAID: CA228410

      gnomAD: MAF of 0.000003160 (1/316464 alleles) in European (non-Finnish) population https://gnomad.broadinstitute.org/variant/chr12-6022833-A-G?dataset=gnomad_r4

      Variant: c.3485C > T, p.(Pro1162Leu)

      HGVS: NM_000552.5:c.3485C>T (p.Pro1162Leu)

      ClinVarID: 256669

      CAID: CA6402756

      gnomAD: MAF of 0.2076 (7087/34136 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6022793-G-A?dataset=gnomad_r4

      Variant: c.3486A > G, p.(Pro1162 =)

      HGVS: NM_000552.5:c.3486A>G (p.Pro1162=)

      ClinVarID: 256670

      CAID: CA6402755

      gnomAD: MAF of 0.2083 (7074/33968 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6022792-T-C?dataset=gnomad_r4

      Variant: c.4414G > C p.(Asp1472His)

      HGVS: NM_000552.5:c.4414G>C (p.Asp1472His)

      ClinVarID: 256679

      CAID: CA6402534

      gnomAD: MAF of 0.5076 (38011/74882 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019004-C-G?dataset=gnomad_r4

      Variant: c.6554G > A, p.(Arg2185Gln)

      HGVS: NM_000552.5:c.6554G>A (p.Arg2185Gln)

      ClinVarID: 100443

      CAID: CA228748

      gnomAD: MAF of 0.1927 (14427/74878 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-5993906-C-T?dataset=gnomad_r4

    27. 38 R

      Case: Patient 38, Family R (Table 1.), F/51, Afro-Caribbean

      DiseaseAssertion: VWD2A (IIE)

      FamilyInfo: Patient 36 (M/22, Afro-Caribbean) and Patient 37 (M/20, Afro-Caribbean) also from Family R. (Table 1.)

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT = 6, FVIII:C (IU/dL) = 30, VWF:Ag (IU/dL) = 20, VWF:Act (IU/dL) = 14

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood group O+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.1530G > A, p.(Val510 =) p.

      HGVS: NM_000552.5:c.1530G>A (p.Val510=)

      ClinVarID:

      CAID: CA6403368

      gnomAD: MAF of 0.00002198 (2/91004 alleles) in South Asian population https://gnomad.broadinstitute.org/variant/chr12-6062957-C-T?dataset=gnomad_r4

      Variant: c.1892C > T, p.(Ala631Val)

      HGVS: NM_000552.5:c.1892C>T (p.Ala631Val)

      ClinVarID: 422844

      CAID: CA6403245

      gnomAD: MAF of 0.001908 (137/71810 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6056910-G-A?dataset=gnomad_r4

      Variant: c.2220G > A, p.(Met740Ile)

      HGVS: NM_000552.5:c.2220G>A (p.Met740Ile)

      ClinVarID: 100206

      CAID: CA201316

      gnomAD: MAF of 0.1816 (13626/75022 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6046784-C-T?dataset=gnomad_r4

      Variant: c.2451T > A, p.(His817Gln)

      HGVS: NM_000552.5:c.2451T>A (p.His817Gln)

      ClinVarID: 100224

      CAID: CA228345

      gnomAD: MAF of 0.1150 (8626/75016 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6036483-A-T?dataset=gnomad_r4

      Variant: c.3445T > C, p.(Cys1149Arg)

      HGVS: NM_000552.5:c.3445T>C (p.Cys1149Arg)

      ClinVarID: 309

      CAID: CA228410

      gnomAD: MAF of 0.000003160 (1/316464 alleles) in European (non-Finnish) population https://gnomad.broadinstitute.org/variant/chr12-6022833-A-G?dataset=gnomad_r4

      Variant: c.4414G > C p.(Asp1472His)

      HGVS: NM_000552.5:c.4414G>C (p.Asp1472His)

      ClinVarID: 256679

      CAID: CA6402534

      gnomAD: MAF of 0.5076 (38011/74882 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019004-C-G?dataset=gnomad_r4

    28. 15 J

      Case: Patient 15, Family J (Table 1.), F/64, Afro-Caribbean

      DiseaseAssertion: Indeterminate effect of the VWF defect due to ISTH BAT at 0

      FamilyInfo: Patient 14 (M/36, Afro-Carribean) also from Family J. (Table 1.)

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT =0, FVIII:C (IU/dL) = 110, VWF:Ag (IU/dL) = 102, VWF:Act (IU/dL) = 40

      CaseNOTHPOs:

      CaseNOTHPOFreeText:

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.3505T > A, p.(Cys1169Ser)

      HGVS: NM_000552.5:c.3505T>A (p.Cys1169Ser)

      ClinVarID:

      CAID: CA383511219

      gnomAD:

    29. 52 S

      Case: Patient 52, Family S (Table 1.), F/48, Afro-Caribbean

      DiseaseAssertion: VWD1

      FamilyInfo: Patient 39 (F/76, Afro-Caribbean), Patient 40 (F/38, Afro-Caribbean)and Patient 41 (m/63, Afro Caribbean) also from Family S. (Table 1.)

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT = 4, FVIII:C (IU/dL) = NA, VWF:Ag (IU/dL) = 30, VWF:Act (IU/dL) = 30

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood group O+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: deletion of exons 9-10

      HGVS: NM_000552.5:c.1030_1317del (p.Gly344_Arg439del)

      ClinVarID:

      CAID: CA3260663889

      gnomAD:

      Variant: c.4414G > C p.(Asp1472His)

      HGVS: NM_000552.5:c.4414G>C (p.Asp1472His)

      ClinVarID: 256679

      CAID: CA6402534

      gnomAD: MAF of 0.5076 (38011/74882 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019004-C-G?dataset=gnomad_r4

    30. 1 A

      Case: Patient 1, Family A (Table 1.), F/49, Afro-Caribbean

      DiseaseAssertion: VWD2B

      FamilyInfo: Patient 2 (F/15, Afro-Caribbean) from same family A (Table 1.)

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT = 7, FVIII:C (IU/dL) = 28, VWF:Ag (IU/dL) = 35, VWF:Act (IU/dL) = 10

      CaseNOTHPOs:

      CaseNOTHPOFreeText:

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.3946G > A p.(Val1316Met)

      HGVS: NM_000552.5:c.3946G>A (p.Val1316Met)

      ClinVarID: 290

      CAID: CA114127

      gnomAD:

    31. 26 N

      Case: Patient 26, Family N (Table 1.), F/58, Afro-Caribbean

      DiseaseAssertion: VWD2A (IIE)

      FamilyInfo: Patient 27 (M/20, Afro-Caribbean) also in Family N. (Table 1.)

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT =12, FVIII:C (IU/dL) = NA, VWF:Ag (IU/dL) = 15, VWF:Act (IU/dL) = 10

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood group B+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.1530G > A, p.(Val510 =)

      HGVS: NM_000552.5:c.1530G>A (p.Val510=)

      ClinVarID:

      CAID: CA6403368

      gnomAD: MAF of 0.00002198 (2/91004 alleles) in South Asian population https://gnomad.broadinstitute.org/variant/chr12-6062957-C-T?dataset=gnomad_r4

      Variant: c.1892C > T, p.(Ala631Val)

      HGVS: NM_000552.5:c.1892C>T (p.Ala631Val)

      ClinVarID: 422844

      CAID: CA6403245

      gnomAD: MAF of 0.001908 (137/71810 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6056910-G-A?dataset=gnomad_r4

      Variant: c.2220G > A, p.(Met740Ile)

      HGVS: NM_000552.5:c.2220G>A (p.Met740Ile)

      ClinVarID: 100206

      CAID: CA201316

      gnomAD: MAF of 0.1816 (13626/75022 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6046784-C-T?dataset=gnomad_r4

      Variant: c.2451T > A, p.(His817Gln)

      HGVS: NM_000552.5:c.2451T>A (p.His817Gln)

      ClinVarID: 100224

      CAID: CA228345

      gnomAD: MAF of 0.1150 (8626/75016 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6036483-A-T?dataset=gnomad_r4

      Variant: c.3445T > C, p.(Cys1149Arg)

      HGVS: NM_000552.5:c.3445T>C (p.Cys1149Arg)

      ClinVarID: 309

      CAID: CA228410

      gnomAD: MAF of 0.000003160 (1/316464 alleles) in European (non-Finnish) population https://gnomad.broadinstitute.org/variant/chr12-6022833-A-G?dataset=gnomad_r4

      Variant: c.4414G > C p.(Asp1472His)

      HGVS: NM_000552.5:c.4414G>C (p.Asp1472His)

      ClinVarID: 256679

      CAID: CA6402534

      gnomAD: MAF of 0.5076 (38011/74882 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019004-C-G?dataset=gnomad_r4

      Variant: c.6554G > A, p.(Arg2185Gln)

      HGVS: NM_000552.5:c.6554G>A (p.Arg2185Gln)

      ClinVarID: 100443

      CAID: CA228748

      gnomAD: MAF of 0.1927 (14427/74878 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-5993906-C-T?dataset=gnomad_r4

    32. 16 G

      Case: Patient 16, Family G (Table 1.), F/58, Afro-Caribbean

      DiseaseAssertion: VWD2A (IIE)

      FamilyInfo: Patient 10 (M/22, Afro-Caribbean) and Patient 17 (F/79, Afro-Caribbean) also from Family G. (Table 1.)

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT =23, FVIII:C (IU/dL) = 44, VWF:Ag (IU/dL) = 20, VWF:Act (IU/dL) = 14

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood group A+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.1530G > A, p.(Val510 =) p.

      HGVS: NM_000552.5:c.1530G>A (p.Val510=)

      ClinVarID:

      CAID: CA6403368

      gnomAD: MAF of 0.00002198 (2/91004 alleles) in South Asian population https://gnomad.broadinstitute.org/variant/chr12-6062957-C-T?dataset=gnomad_r4

      Variant: c.1892C > T, p.(Ala631Val)

      HGVS: NM_000552.5:c.1892C>T (p.Ala631Val)

      ClinVarID: 422844

      CAID: CA6403245

      gnomAD: MAF of 0.001908 (137/71810 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6056910-G-A?dataset=gnomad_r4

      Variant: c.2220G > A, p.(Met740Ile)

      HGVS: NM_000552.5:c.2220G>A (p.Met740Ile)

      ClinVarID: 100206

      CAID: CA201316

      gnomAD: MAF of 0.1816 (13626/75022 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6046784-C-T?dataset=gnomad_r4

      Variant: c.2451T > A, p.(His817Gln)

      HGVS: NM_000552.5:c.2451T>A (p.His817Gln)

      ClinVarID: 100224

      CAID: CA228345

      gnomAD: MAF of 0.1150 (8626/75016 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6036483-A-T?dataset=gnomad_r4

      Variant: c.3445T > C, p.(Cys1149Arg)

      HGVS: NM_000552.5:c.3445T>C (p.Cys1149Arg)

      ClinVarID: 309

      CAID: CA228410

      gnomAD: MAF of 0.000003160 (1/316464 alleles) in European (non-Finnish) population https://gnomad.broadinstitute.org/variant/chr12-6022833-A-G?dataset=gnomad_r4

      Variant: c.4414G > C p.(Asp1472His)

      HGVS: NM_000552.5:c.4414G>C (p.Asp1472His)

      ClinVarID: 256679

      CAID: CA6402534

      gnomAD: MAF of 0.5076 (38011/74882 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019004-C-G?dataset=gnomad_r4

      Variant: c.6554G > A, p.(Arg2185Gln)

      HGVS: NM_000552.5:c.6554G>A (p.Arg2185Gln)

      ClinVarID: 100443

      CAID: CA228748

      gnomAD: MAF of 0.1927 (14427/74878 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-5993906-C-T?dataset=gnomad_r4

    33. 2 A

      Case: Patient 2, Family A (Table 1.), F/15, Afro-Caribbean

      DiseaseAssertion: VWD2B

      FamilyInfo: Patient 1 (F/49, Afro-Caribbean) from same family G. (Table 1.)

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT = 3, FVIII:C (IU/dL) = 50, VWF:Ag (IU/dL) = 57, VWF:Act (IU/dL) = 14

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood group O+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.3946G > A p.(Val1316Met)

      HGVS: NM_000552.5:c.3946G>A (p.Val1316Met)

      ClinVarID: 290

      CAID: CA114127

      gnomAD:

    34. 54 A1

      Case: Patient 54, Family A1 (Table 1.), M/33, Afro-Caribbean

      DiseaseAssertion: VWD1

      FamilyInfo: Patient 55 (F/54, Afro-Caribbean), Patient 56 (M/64, Afro-Caribbean), Patient 57 (F/26, Afro-Caribbean), Patient 63 (F/59, Afro-Caribbean) also from Family A1. (Table 1.)

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT = 1, FVIII:C (IU/dL) = 58.1, VWF:Ag (IU/dL) = 35, VWF:Act (IU/dL) = 38

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood group A+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.7472G > A, p.(Cys2491Tyr)

      HGVS: NM_000552.5:c.7472G>A (p.Cys2491Tyr)

      ClinVarID:

      CAID: CA383489765

      gnomAD:

    35. 19 L

      Case: Patient 19, Family L (Table 1.), M/76, Afro-Caribbean

      DiseaseAssertion: VWD2A (IIE)

      FamilyInfo:

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT =4, FVIII:C (IU/dL) = NA, VWF:Ag (IU/dL) = 70, VWF:Act (IU/dL) = 28

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood group A+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.1530G > A, p.(Val510 =) p.

      HGVS: NM_000552.5:c.1530G>A (p.Val510=)

      ClinVarID:

      CAID: CA6403368

      gnomAD: MAF of 0.00002198 (2/91004 alleles) in South Asian population https://gnomad.broadinstitute.org/variant/chr12-6062957-C-T?dataset=gnomad_r4

      Variant: c.1892C > T, p.(Ala631Val)

      HGVS: NM_000552.5:c.1892C>T (p.Ala631Val)

      ClinVarID: 422844

      CAID: CA6403245

      gnomAD: MAF of 0.001908 (137/71810 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6056910-G-A?dataset=gnomad_r4

      Variant: c.2220G > A, p.(Met740Ile)

      HGVS: NM_000552.5:c.2220G>A (p.Met740Ile)

      ClinVarID: 100206

      CAID: CA201316

      gnomAD: MAF of 0.1816 (13626/75022 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6046784-C-T?dataset=gnomad_r4

      Variant: c.2451T > A, p.(His817Gln)

      HGVS: NM_000552.5:c.2451T>A (p.His817Gln)

      ClinVarID: 100224

      CAID: CA228345

      gnomAD: MAF of 0.1150 (8626/75016 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6036483-A-T?dataset=gnomad_r4

      Variant: c.3445T > C, p.(Cys1149Arg)

      HGVS: NM_000552.5:c.3445T>C (p.Cys1149Arg)

      ClinVarID: 309

      CAID: CA228410

      gnomAD: MAF of 0.000003160 (1/316464 alleles) in European (non-Finnish) population https://gnomad.broadinstitute.org/variant/chr12-6022833-A-G?dataset=gnomad_r4

      Variant: c.4414G > C p.(Asp1472His)

      HGVS: NM_000552.5:c.4414G>C (p.Asp1472His)

      ClinVarID: 256679

      CAID: CA6402534

      gnomAD: MAF of 0.5076 (38011/74882 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019004-C-G?dataset=gnomad_r4

      Variant: c.6554G > A, p.(Arg2185Gln

      HGVS: NM_000552.5:c.6554G>A (p.Arg2185Gln)

      ClinVarID: 100443

      CAID: CA228748

      gnomAD: MAF of 0.1927 (14427/74878 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-5993906-C-T?dataset=gnomad_r4

    36. 13 I

      Case: Patient 13, Family I (Table 1.), F/65, Afro-Caribbean

      DiseaseAssertion: VWD2A (IIE)

      FamilyInfo: Patient 21 (F/97, Afro-Caribbean), Patient 22 (F/67, Afro-Caribbean), Patient 23 (F/86, Afro-Caribbean), Patient 24 (F/92, Afro-Caribbean), Patient 25 (F/62, Afro-Carribean) also from Family I. (Table 1.)

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT =12, FVIII:C (IU/dL) = 18, VWF:Ag (IU/dL) = 18, VWF:Act (IU/dL) = 7

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood group O+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.1530G > A, p.(Val510 =) p.

      HGVS: NM_000552.5:c.1530G>A (p.Val510=)

      ClinVarID:

      CAID: CA6403368

      gnomAD: MAF of 0.00002198 (2/91004 alleles) in South Asian population https://gnomad.broadinstitute.org/variant/chr12-6062957-C-T?dataset=gnomad_r4

      Variant: c.1892C > T, p.(Ala631Val)

      HGVS: NM_000552.5:c.1892C>T (p.Ala631Val)

      ClinVarID: 422844

      CAID: CA6403245

      gnomAD: MAF of 0.001908 (137/71810 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6056910-G-A?dataset=gnomad_r4

      Variant: c.2220G > A, p.(Met740Ile)

      HGVS: NM_000552.5:c.2220G>A (p.Met740Ile)

      ClinVarID: 100206

      CAID: CA201316

      gnomAD: MAF of 0.1816 (13626/75022 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6046784-C-T?dataset=gnomad_r4

      Variant: c.2451T > A, p.(His817Gln)

      HGVS: NM_000552.5:c.2451T>A (p.His817Gln)

      ClinVarID: 100224

      CAID: CA228345

      gnomAD: MAF of 0.1150 (8626/75016 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6036483-A-T?dataset=gnomad_r4

      Variant: c.3258C > T, p.(Tyr1086 =)

      HGVS: NM_000552.5:c.3258C>T (p.Tyr1086=)

      ClinVarID: 256664

      CAID: CA6402788

      gnomAD: MAF of 0.1284 (9131/71128 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6023752-G-A?dataset=gnomad_r4

      Variant: c.3445T > C, p.(Cys1149Arg)

      HGVS: NM_000552.5:c.3445T>C (p.Cys1149Arg)

      ClinVarID: 309

      CAID: CA228410

      gnomAD: MAF of 0.000003160 (1/316464 alleles) in European (non-Finnish) population https://gnomad.broadinstitute.org/variant/chr12-6022833-A-G?dataset=gnomad_r4

      Variant: c.4414G > C p.(Asp1472His)

      HGVS: NM_000552.5:c.4414G>C (p.Asp1472His) ClinVarID: 256679

      CAID: CA6402534

      gnomAD: MAF of 0.5076 (38011/74882 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019004-C-G?dataset=gnomad_r4

      Variant: c.6554G > A, p.(Arg2185Gln)

      HGVS: NM_000552.5:c.6554G>A (p.Arg2185Gln)

      ClinVarID: 100443

      CAID: CA228748

      gnomAD: MAF of 0.1927 (14427/74878 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-5993906-C-T?dataset=gnomad_r4

    37. 8 F

      Case: Patient 8, Family F (Table 1.), M/86, Afro-Caribbean

      DiseaseAssertion: VWD2A (IIE)

      FamilyInfo: Patient 9 (F/76, Afro-Caribbean) and Patient 28 (F/55, Afro-Caribbean) also from Family F. (Table 1.)

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT = 5, FVIII:C (IU/dL) = 17, VWF:Ag (IU/dL) = 20, VWF:Act (IU/dL) = 10

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood group O+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.1530G > A, p.(Val510 =) p.

      HGVS: NM_000552.5:c.1530G>A (p.Val510=)

      ClinVarID:

      CAID: CA6403368

      gnomAD: MAF of 0.00002198 (2/91004 alleles) in South Asian population https://gnomad.broadinstitute.org/variant/chr12-6062957-C-T?dataset=gnomad_r4

      Variant: c.1892C > T, p.(Ala631Val)

      HGVS: NM_000552.5:c.1892C>T (p.Ala631Val)

      ClinVarID: 422844

      CAID: CA6403245

      gnomAD: MAF of 0.001908 (137/71810 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6056910-G-A?dataset=gnomad_r4

      Variant: c.2220G > A, p.(Met740Ile)

      HGVS: NM_000552.5:c.2220G>A (p.Met740Ile)

      ClinVarID: 100206

      CAID: CA201316

      gnomAD: MAF of 0.1816 (13626/75022 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6046784-C-T?dataset=gnomad_r4

      Variant: c.2451T > A, p.(His817Gln)

      HGVS: NM_000552.5:c.2451T>A (p.His817Gln)

      ClinVarID: 100224

      CAID: CA228345

      gnomAD: MAF of 0.1150 (8626/75016 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6036483-A-T?dataset=gnomad_r4

      Variant: c.3426T > C, p.(Cys1142 =)

      HGVS: NM_000552.5:c.3426T>C (p.Cys1142=)

      ClinVarID: 256668

      CAID: CA6402757

      gnomAD: MAF of 0.2077 (7935/38206 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6022852-A-G?dataset=gnomad_r4

      Variant: c.3445T > C, p.(Cys1149Arg)

      HGVS: NM_000552.5:c.3445T>C (p.Cys1149Arg)

      ClinVarID: 309

      CAID: CA228410

      gnomAD: MAF of 0.000003160 (1/316464 alleles) in European (non-Finnish) population https://gnomad.broadinstitute.org/variant/chr12-6022833-A-G?dataset=gnomad_r4

      Variant: c.3485C > T, p.(Pro1162Leu)

      HGVS: NM_000552.5(VWF):c.3485C>T (p.Pro1162Leu)

      ClinVarID: 256669

      CAID: CA6402756

      gnomAD: MAF of 0.2076 (7087/34136 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6022793-G-A?dataset=gnomad_r4

      Variant: c.3486A > G, p.(Pro1162 =)

      HGVS: NM_000552.5:c.3486A>G (p.Pro1162=)

      ClinVarID: 256670

      CAID: CA6402755

      gnomAD: MAF of 0.2083 (7074/33968 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6022792-T-C?dataset=gnomad_r4

      Variant: c.4414G > C p.(Asp1472His)

      HGVS: NM_000552.5:c.4414G>C (p.Asp1472His)

      ClinVarID: 256679

      CAID: CA6402534

      gnomAD: MAF of 0.5076 (38011/74882 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019004-C-G?dataset=gnomad_r4

      Variant: c.6554G > A, p.(Arg2185Gln)

      HGVS: NM_000552.5:c.6554G>A (p.Arg2185Gln)

      ClinVarID: 100443

      CAID: CA228748

      gnomAD: MAF of 0.1927 (14427/74878 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-5993906-C-T?dataset=gnomad_r4

    38. 53 Z

      Case: Patient 53, Family Z (Table 1.), F/92, Afro-Caribbean

      DiseaseAssertion: VWD1

      FamilyInfo: NA

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT = 0, FVIII:C (IU/dL) = 33, VWF:Ag (IU/dL) = 35, VWF:Act (IU/dL) = 30

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood group O+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Variant: c.2220G > A, p.(Met740Ile)

      HGVS: NM_000552.5:c.2220G>A (p.Met740Ile)

      ClinVarID: 100206

      CAID: CA201316

      gnomAD: MAF of 0.1816 (13626/75022 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6046784-C-T?dataset=gnomad_r4

      Variant: c.2451T > A, p.(His817Gln)

      HGVS: NM_000552.5:c.2451T>A (p.His817Gln)

      ClinVarID: 100224

      CAID: CA228345

      gnomAD: MAF of 0.1150 (8626/75016 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6036483-A-T?dataset=gnomad_r4

      Variant: c.3258C > T, p.(Tyr1086 =)

      HGVS: NM_000552.5:c.3258C>T (p.Tyr1086=)

      ClinVarID: 256664

      CAID: CA6402788

      gnomAD: MAF of 0.1284 (9131/71128 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6023752-G-A?dataset=gnomad_r4

      Variant: c.4414G > C p.(Asp1472His)

      HGVS: NM_000552.5:c.4414G>C (p.Asp1472His)

      ClinVarID: 256679

      CAID: CA6402534

      gnomAD: MAF of 0.5076 (38011/74882 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019004-C-G?dataset=gnomad_r4

      Variant: c.6554G > A, p.(Arg2185Gln)

      HGVS: NM_000552.5:c.6554G>A (p.Arg2185Gln)

      ClinVarID: 100443

      CAID: CA228748

      gnomAD: MAF of 0.1927 (14427/74878 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-5993906-C-T?dataset=gnomad_r4

      Variant: c.6647del, (Cys2216Phefs*9)

      HGVS: NM_000552.5:c.6647del (p.Cys2216Phefs*9)

      ClinVarID:

      CAID: CA2695216024

      gnomAD:

      Variant: c.6859C > T, p.(Arg2287Trp)

      HGVS: NM_000552.5:c.6859C>T (p.Arg2287Trp)

      ClinVarID: 100450

      CAID: CA228760

      gnomAD: MAF of 0.008928 (670/75044 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-5985605-G-A?dataset=gnomad_r4

    39. 21 I

      Case: Patient 21, Family I (Table 1.), F/97, Afro-Caribbean

      DiseaseAssertion: VWD2A (IIE)

      FamilyInfo: Patient 13 (F/65, Afro-Caribbean), Patient 22 (F/67, Afro-Caribbean), Patient 23 (F/86, Afro-Caribbean), Patient 24 (F/92, Afro-Caribbean), Patient 25 (F/62, Afro-Carribean) also from Family I. (Table 1.)

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT =0, FVIII:C (IU/dL) = 35, VWF:Ag (IU/dL) = 25, VWF:Act (IU/dL) = 8

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood group B+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.1530G > A, p.(Val510 =) p.

      HGVS: NM_000552.5:c.1530G>A (p.Val510=)

      ClinVarID:

      CAID: CA6403368

      gnomAD: MAF of 0.00002198 (2/91004 alleles) in South Asian population https://gnomad.broadinstitute.org/variant/chr12-6062957-C-T?dataset=gnomad_r4

      Variant: c.1892C > T, p.(Ala631Val)

      HGVS: NM_000552.5:c.1892C>T (p.Ala631Val)

      ClinVarID: 422844

      CAID: CA6403245

      gnomAD: MAF of 0.001908 (137/71810 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6056910-G-A?dataset=gnomad_r4

      Variant: c.2220G > A, p.(Met740Ile)

      HGVS: NM_000552.5:c.2220G>A (p.Met740Ile)

      ClinVarID: 100206

      CAID: CA201316

      gnomAD: MAF of 0.1816 (13626/75022 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6046784-C-T?dataset=gnomad_r4

      Variant: c.2451T > A, p.(His817Gln)

      HGVS: NM_000552.5:c.2451T>A (p.His817Gln)

      ClinVarID: 100224

      CAID: CA228345

      gnomAD: MAF of 0.1150 (8626/75016 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6036483-A-T?dataset=gnomad_r4

      Variant: c.3258C > T, p.(Tyr1086 =)

      HGVS: NM_000552.5:c.3258C>T (p.Tyr1086=)

      ClinVarID: 256664

      CAID: CA6402788

      gnomAD: MAF of 0.1284 (9131/71128 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6023752-G-A?dataset=gnomad_r4

      Variant: c.3445T > C, p.(Cys1149Arg)

      HGVS: NM_000552.5:c.3445T>C (p.Cys1149Arg)

      ClinVarID: 309

      CAID: CA228410

      gnomAD: MAF of 0.000003160 (1/316464 alleles) in European (non-Finnish) population https://gnomad.broadinstitute.org/variant/chr12-6022833-A-G?dataset=gnomad_r4

      Variant: c.4414G > C p.(Asp1472His)

      HGVS: NM_000552.5:c.4414G>C (p.Asp1472His)

      ClinVarID: 256679

      CAID: CA6402534

      gnomAD: MAF of 0.5076 (38011/74882 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019004-C-G?dataset=gnomad_r4

      Variant: c.6554G > A, p.(Arg2185Gln)

      HGVS: NM_000552.5:c.6554G>A (p.Arg2185Gln)

      ClinVarID: 100443

      CAID: CA228748

      gnomAD: MAF of 0.1927 (14427/74878 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-5993906-C-T?dataset=gnomad_r4

    40. 25 I

      Case: Patient 25, Family I (Table 1.), F/62, Afro-Caribbean

      DiseaseAssertion: VWD2A (IIE)

      FamilyInfo: Patient 13 (F/65, Afro-Caribbean), Patient 21 (F/97, Afro-Caribbean), Patient 22 (F/67, Afro-Caribbean), Patient 23 (F/86, Afro-Caribbean), Patient 24 (F/92, Afro-Carribean) also from Family I. (Table 1.)

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT =6, FVIII:C (IU/dL) = 16, VWF:Ag (IU/dL) = 25, VWF:Act (IU/dL) = 14

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood group B+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.1530G > A, p.(Val510 =) p.

      HGVS: NM_000552.5:c.1530G>A (p.Val510=)

      ClinVarID:

      CAID: CA6403368

      gnomAD: MAF of 0.00002198 (2/91004 alleles) in South Asian population https://gnomad.broadinstitute.org/variant/chr12-6062957-C-T?dataset=gnomad_r4

      Variant: c.1892C > T, p.(Ala631Val)

      HGVS: NM_000552.5:c.1892C>T (p.Ala631Val)

      ClinVarID: 422844

      CAID: CA6403245

      gnomAD: MAF of 0.001908 (137/71810 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6056910-G-A?dataset=gnomad_r4

      Variant: c.2220G > A, p.(Met740Ile)

      HGVS: NM_000552.5:c.2220G>A (p.Met740Ile)

      ClinVarID: 100206

      CAID: CA201316

      gnomAD: MAF of 0.1816 (13626/75022 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6046784-C-T?dataset=gnomad_r4

      Variant: c.2451T > A, p.(His817Gln)

      HGVS: NM_000552.5:c.2451T>A (p.His817Gln)

      ClinVarID: 100224

      CAID: CA228345

      gnomAD: MAF of 0.1150 (8626/75016 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6036483-A-T?dataset=gnomad_r4

      Variant: c.3258C > T, p.(Tyr1086 =)

      HGVS: NM_000552.5:c.3258C>T (p.Tyr1086=)

      ClinVarID: 256664

      CAID: CA6402788

      gnomAD: MAF of 0.1284 (9131/71128 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6023752-G-A?dataset=gnomad_r4

      Variant: c.3445T > C, p.(Cys1149Arg)

      HGVS: NM_000552.5:c.3445T>C (p.Cys1149Arg)

      ClinVarID: 309

      CAID: CA228410

      gnomAD: MAF of 0.000003160 (1/316464 alleles) in European (non-Finnish) population https://gnomad.broadinstitute.org/variant/chr12-6022833-A-G?dataset=gnomad_r4

      Variant: c.4138A > G, p.(Ile1380Val)

      HGVS: NM_000552.5:c.4138A>G (p.Ile1380Val)

      ClinVarID: 310063

      CAID: CA6402595

      gnomAD: MAF of 0.1184 (8878/74958 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019280-T-C?dataset=gnomad_r4

      Variant: c.4304A > G, p.(Asn1435Ser)

      HGVS: NM_000552.5:c.4304A>G (p.Asn1435Ser)

      ClinVarID: 310062

      CAID: CA6402552

      gnomAD: MAF of 0.1124 (8427/74964 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019114-T-C?dataset=gnomad_r4

      Variant: c.4414G > C p.(Asp1472His)

      HGVS: NM_000552.5:c.4414G>C (p.Asp1472His)

      ClinVarID: 256679

      CAID: CA6402534

      gnomAD: MAF of 0.5076 (38011/74882 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019004-C-G?dataset=gnomad_r4

      Variant: c.6554G > A, p.(Arg2185Gln)

      HGVS: NM_000552.5:c.6554G>A (p.Arg2185Gln)

      ClinVarID: 100443

      CAID: CA228748

      gnomAD: MAF of 0.1927 (14427/74878 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-5993906-C-T?dataset=gnomad_r4

    41. 12 H

      Case: Patient 12, Family H (Table 1.), F/99, Afro-Caribbean

      DiseaseAssertion: VWD2A (IIE)

      FamilyInfo: Patient 11 (M/71, Afro-Caribbean) also from Family H. (Table 1.)

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT =8, FVIII:C (IU/dL) = 56, VWF:Ag (IU/dL) = 15, VWF:Act (IU/dL) = 24

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood group O+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.1530G > A, p.(Val510 =) p.

      HGVS: NM_000552.5:c.1530G>A (p.Val510=)

      ClinVarID:

      CAID: CA6403368

      gnomAD: MAF of 0.00002198 (2/91004 alleles) in South Asian population https://gnomad.broadinstitute.org/variant/chr12-6062957-C-T?dataset=gnomad_r4

      Variant: c.1892C > T, p.(Ala631Val)

      HGVS: NM_000552.5:c.1892C>T (p.Ala631Val)

      ClinVarID: 422844

      CAID: CA6403245

      gnomAD: MAF of 0.001908 (137/71810 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6056910-G-A?dataset=gnomad_r4

      Variant: c.2220G > A, p.(Met740Ile)

      HGVS: NM_000552.5:c.2220G>A (p.Met740Ile)

      ClinVarID: 100206

      CAID: CA201316

      gnomAD: MAF of 0.1816 (13626/75022 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6046784-C-T?dataset=gnomad_r4

      Variant: c.2451T > A, p.(His817Gln)

      HGVS: NM_000552.5:c.2451T>A (p.His817Gln)

      ClinVarID: 100224

      CAID: CA228345

      gnomAD: MAF of 0.1150 (8626/75016 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6036483-A-T?dataset=gnomad_r4

      Variant: c.3445T > C, p.(Cys1149Arg)

      HGVS: NM_000552.5:c.3445T>C (p.Cys1149Arg)

      ClinVarID: 309

      CAID: CA228410

      gnomAD: MAF of 0.000003160 (1/316464 alleles) in European (non-Finnish) population https://gnomad.broadinstitute.org/variant/chr12-6022833-A-G?dataset=gnomad_r4

      Variant: c.4414G > C p.(Asp1472His)

      HGVS: NM_000552.5:c.4414G>C (p.Asp1472His)

      ClinVarID: 256679

      CAID: CA6402534

      gnomAD: MAF of 0.5076 (38011/74882 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019004-C-G?dataset=gnomad_r4

      Variant: c.6554G > A, p.(Arg2185Gln)

      HGVS: NM_000552.5:c.6554G>A (p.Arg2185Gln)

      ClinVarID: 100443

      CAID: CA228748

      gnomAD: MAF of 0.1927 (14427/74878 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-5993906-C-T?dataset=gnomad_r4

    42. 11 H

      Case: Patient 11, Family H (Table 1.), M/71, Afro-Caribbean

      DiseaseAssertion: VWD2A (IIE)

      FamilyInfo: Patient 12 (F/99, Afro-Caribbean) also from Family H. (Table 1.)

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT =15, FVIII:C (IU/dL) = 30, VWF:Ag (IU/dL) = 15, VWF:Act (IU/dL) = 7

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood group O+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.1530G > A, p.(Val510 =) p.

      HGVS: NM_000552.5:c.1530G>A (p.Val510=)

      ClinVarID:

      CAID: CA6403368

      gnomAD: MAF of 0.00002198 (2/91004 alleles) in South Asian population https://gnomad.broadinstitute.org/variant/chr12-6062957-C-T?dataset=gnomad_r4

      Variant: c.1892C > T, p.(Ala631Val)

      HGVS: NM_000552.5:c.1892C>T (p.Ala631Val)

      ClinVarID: 422844

      CAID: CA6403245

      gnomAD: MAF of 0.001908 (137/71810 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6056910-G-A?dataset=gnomad_r4

      Variant: c.2220G > A, p.(Met740Ile)

      HGVS: NM_000552.5:c.2220G>A (p.Met740Ile)

      ClinVarID: 100206

      CAID: CA201316

      gnomAD: MAF of 0.1816 (13626/75022 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6046784-C-T?dataset=gnomad_r4

      Variant: c.2451T > A, p.(His817Gln)

      HGVS: NM_000552.5:c.2451T>A (p.His817Gln)

      ClinVarID: 100224

      CAID: CA228345

      gnomAD: MAF of 0.1150 (8626/75016 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6036483-A-T?dataset=gnomad_r4

      Variant: c.3445T > C, p.(Cys1149Arg)

      HGVS: NM_000552.5:c.3445T>C (p.Cys1149Arg)

      ClinVarID: 309

      CAID: CA228410

      gnomAD: MAF of 0.000003160 (1/316464 alleles) in European (non-Finnish) population https://gnomad.broadinstitute.org/variant/chr12-6022833-A-G?dataset=gnomad_r4

      Variant: c.4414G > C p.(Asp1472His)

      HGVS: NM_000552.5:c.4414G>C (p.Asp1472His)

      ClinVarID: 256679

      CAID: CA6402534

      gnomAD: MAF of 0.5076 (38011/74882 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019004-C-G?dataset=gnomad_r4

      Variant: c.6554G > A, p.(Arg2185Gln)

      HGVS: NM_000552.5:c.6554G>A (p.Arg2185Gln)

      ClinVarID: 100443

      CAID: CA228748

      gnomAD: MAF of 0.1927 (14427/74878 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-5993906-C-T?dataset=gnomad_r4

    43. 30 O

      Case: Patient 30, Family O (Table 1.), M/42, Afro-Caribbean

      DiseaseAssertion: VWD2A (IIE)

      FamilyInfo: Patient 31 (F/73, Afro-Caribbean) also from Family O. (Table 1.)

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT = 4, FVIII:C (IU/dL) = 35, VWF:Ag (IU/dL) = 10, VWF:Act (IU/dL) = 29

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood group O+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.1530G > A, p.(Val510 =) p.

      HGVS: NM_000552.5:c.1530G>A (p.Val510=)

      ClinVarID:

      CAID: CA6403368

      gnomAD: MAF of 0.00002198 (2/91004 alleles) in South Asian population https://gnomad.broadinstitute.org/variant/chr12-6062957-C-T?dataset=gnomad_r4

      Variant: c.1892C > T, p.(Ala631Val)

      HGVS: NM_000552.5:c.1892C>T (p.Ala631Val)

      ClinVarID: 422844

      CAID: CA6403245

      gnomAD: MAF of 0.001908 (137/71810 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6056910-G-A?dataset=gnomad_r4

      Variant: c.2220G > A, p.(Met740Ile)

      HGVS: NM_000552.5:c.2220G>A (p.Met740Ile)

      ClinVarID: 100206

      CAID: CA201316

      gnomAD: MAF of 0.1816 (13626/75022 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6046784-C-T?dataset=gnomad_r4

      Variant: c.2451T > A, p.(His817Gln)

      HGVS: NM_000552.5:c.2451T>A (p.His817Gln)

      ClinVarID: 100224

      CAID: CA228345

      gnomAD: MAF of 0.1150 (8626/75016 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6036483-A-T?dataset=gnomad_r4

      Variant: c.3445T > C, p.(Cys1149Arg)

      HGVS: NM_000552.5:c.3445T>C (p.Cys1149Arg)

      ClinVarID: 309

      CAID: CA228410

      gnomAD: MAF of 0.000003160 (1/316464 alleles) in European (non-Finnish) population https://gnomad.broadinstitute.org/variant/chr12-6022833-A-G?dataset=gnomad_r4

      Variant: c.4414G > C p.(Asp1472His)

      HGVS: NM_000552.5:c.4414G>C (p.Asp1472His)

      ClinVarID: 256679

      CAID: CA6402534

      gnomAD: MAF of 0.5076 (38011/74882 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019004-C-G?dataset=gnomad_r4

      Variant: c.6554G > A, p.(Arg2185Gln)

      HGVS: NM_000552.5:c.6554G>A (p.Arg2185Gln)

      ClinVarID: 100443

      CAID: CA228748

      gnomAD: MAF of 0.1927 (14427/74878 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-5993906-C-T?dataset=gnomad_r4

    44. 32 K

      Case: Patient 32, Family K (Table 1.), F/17, Afro-Caribbean

      DiseaseAssertion: VWD2A (IIE)

      FamilyInfo: Patient 18 (F/53, Afro-Carribean), Patient 29 (F/33, Afro-Caribbean), Patient 33 (F/49, Afro-Caribbean) also from Family K. (Table 1.)

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT =4, FVIII:C (IU/dL) = 79, VWF:Ag (IU/dL) = 49, VWF:Act (IU/dL) = 37

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood type O+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.2365A > G, p.(Thr789Ala)

      HGVS: NM_000552.5:c.2365A>G (p.Thr789Ala)

      ClinVarID: 256659

      CAID: CA6403090

      gnomAD: MAF of 0.5793 (43409/74928 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6044368-T-C?dataset=gnomad_r4

      Variant: c.2385T > C, p.(Tyr795 =)

      HGVS: NM_000552.5:c.2385T>C (p.Tyr795=)

      ClinVarID: 256660

      CAID: CA6403087

      gnomAD: MAF of 0.5788 (43385/74952 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6044348-A-G?dataset=gnomad_r4

      Variant: c.2880G > A, p.(Arg960 =)

      HGVS: NM_000552.5:c.2880G>A (p.Arg960=)

      ClinVarID: 195657

      CAID: CA201877

      gnomAD: MAF of 0.3169 (23737/74896 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6029429-C-T?dataset=gnomad_r4

      Variant: c.3505T > A, p.(Cys1169Ser)

      HGVS: NM_000552.5:c.3505T>A (p.Cys1169Ser)

      ClinVarID:

      CAID: CA383511219

      gnomAD:

    45. 39 S

      Case: Patient 39, Family S (Table 1.), F/76, Afro-Caribbean

      DiseaseAssertion: VWD2A (IIA)

      FamilyInfo: Patient 40 (F/38, Afro-Caribbean), Patient 41 (M/63, Afro-Caribbean) and Patient 52 (F/48, Afro Caribbean) also from Family S. (Table 1.)

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT = 3, FVIII:C (IU/dL) = 74, VWF:Ag (IU/dL) = 35, VWF:Act (IU/dL) = 12

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood group O+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: deletion of exons 9-10

      HGVS: NM_000552.5:c.1030_1317del (p.Gly344_Arg439del)

      ClinVarID:

      CAID: CA3260663889

      gnomAD:

      Variant: c.4138A > G, p.(Ile1380Val)

      HGVS: NM_000552.5:c.4138A>G (p.Ile1380Val)

      ClinVarID: 310063

      CAID: CA6402595

      gnomAD: MAF of 0.1184 (8878/74958 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019280-T-C?dataset=gnomad_r4

      Variant: c.4304A > G, p.(Asn1435Ser)

      HGVS: NM_000552.5:c.4304A>G (p.Asn1435Ser)

      ClinVarID: 310062

      CAID: CA6402552

      gnomAD: MAF of 0.1124 (8427/74964 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019114-T-C?dataset=gnomad_r4

      Variant: c.4414G > C p.(Asp1472His)

      HGVS: NM_000552.5:c.4414G>C (p.Asp1472His)

      ClinVarID: 256679

      CAID: CA6402534

      gnomAD: MAF of 0.5076 (38011/74882 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019004-C-G?dataset=gnomad_r4

      Variant: c.4628C > G p.(Ser1543Cys)

      HGVS: NM_000552.5:c.4628C>G (p.Ser1543Cys)

      ClinVarID: 4533008

      CAID: CA383500651

      gnomAD:

    46. 9 F

      Case: Patient 9, Family F (Table 1.), F/76, Afro-Caribbean

      DiseaseAssertion: VWD2A (IIE)

      FamilyInfo: Patient 8 (M/86, Afro-Caribbean) and Patient 28 (F/55, Afro-Caribbean) also from Family F. (Table 1.)

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT =11, FVIII:C (IU/dL) = 40, VWF:Ag (IU/dL) = 30, VWF:Act (IU/dL) = 28

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood group B-

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.1530G > A, p.(Val510 =) p.

      HGVS: NM_000552.5:c.1530G>A (p.Val510=)

      ClinVarID:

      CAID: CA6403368

      gnomAD: MAF of 0.00002198 (2/91004 alleles) in South Asian population https://gnomad.broadinstitute.org/variant/chr12-6062957-C-T?dataset=gnomad_r4

      Variant: c.1892C > T, p.(Ala631Val)

      HGVS: NM_000552.5:c.1892C>T (p.Ala631Val)

      ClinVarID: 422844

      CAID: CA6403245

      gnomAD: MAF of 0.001908 (137/71810 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6056910-G-A?dataset=gnomad_r4

      Variant: c.2220G > A, p.(Met740Ile)

      HGVS: NM_000552.5:c.2220G>A (p.Met740Ile)

      ClinVarID: 100206

      CAID: CA201316

      gnomAD: MAF of 0.1816 (13626/75022 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6046784-C-T?dataset=gnomad_r4

      Variant: c.2451T > A, p.(His817Gln)

      HGVS: NM_000552.5:c.2451T>A (p.His817Gln)

      ClinVarID: 100224

      CAID: CA228345

      gnomAD: MAF of 0.1150 (8626/75016 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6036483-A-T?dataset=gnomad_r4

      Variant: c.3426T > C, p.(Cys1142 =)

      HGVS: NM_000552.5:c.3426T>C (p.Cys1142=)

      ClinVarID: 256668

      CAID: CA6402757

      gnomAD: MAF of 0.2077 (7935/38206 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6022852-A-G?dataset=gnomad_r4

      Variant: c.3445T > C, p.(Cys1149Arg)

      HGVS: NM_000552.5:c.3445T>C (p.Cys1149Arg)

      ClinVarID: 309

      CAID: CA228410

      gnomAD: MAF of 0.000003160 (1/316464 alleles) in European (non-Finnish) population https://gnomad.broadinstitute.org/variant/chr12-6022833-A-G?dataset=gnomad_r4

      Variant: c.3485C > T, p.(Pro1162Leu)

      HGVS: NM_000552.5(VWF):c.3485C>T (p.Pro1162Leu)

      ClinVarID: 256669

      CAID: CA6402756

      gnomAD: MAF of 0.2076 (7087/34136 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6022793-G-A?dataset=gnomad_r4

      Variant: c.3486A > G, p.(Pro1162 =)

      HGVS: NM_000552.5:c.3486A>G (p.Pro1162=)

      ClinVarID: 256670

      CAID: CA6402755

      gnomAD: MAF of 0.2083 (7074/33968 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6022792-T-C?dataset=gnomad_r4

      Variant: c.4414G > C p.(Asp1472His)

      HGVS: NM_000552.5:c.4414G>C (p.Asp1472His)

      ClinVarID: 256679

      CAID: CA6402534

      gnomAD: MAF of 0.5076 (38011/74882 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019004-C-G?dataset=gnomad_r4

      Variant: c.6554G > A, p.(Arg2185Gln)

      HGVS: NM_000552.5:c.6554G>A (p.Arg2185Gln)

      ClinVarID: 100443

      CAID: CA228748

      gnomAD: MAF of 0.1927 (14427/74878 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-5993906-C-T?dataset=gnomad_r4

    47. 45 V

      Case: Patient 45, Family V (Table 1.), M/51, Afro-Caribbean

      DiseaseAssertion: VWD2M

      FamilyInfo: NA

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT = 5, FVIII:C (IU/dL) = 45, VWF:Ag (IU/dL) = 96, VWF:Act (IU/dL) = 59

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood group O+

      CasePreviousTesting:

      GenotypingMethod: All samples were analyzed by captured-based high throughput sequencing which was performed with a custom-design of the VWF gene provided by Twist BioScience (San Francisco, USA). It comprised all 52 exons, intronic flanking regions, promoter and 3’UTR region of the VWF gene. Libraries were prepared by using the Twist NGS target enrichment solution (Twist BioScience) according to the manufacturer protocol. Samples were analyzed on a NovaSeq 6000 sequencer (Illumina) with a median read depth of 2500X by using the 300-cycle S1 NovaSeq 6000seq reagent kit with 150-bp paired-end reads. The raw data were analyzed with Mutect21 and Vardict2 tools. The inhouse NGSreport software (CHU Lille) was used for data visualization, sequences check and conservation of variants with high quality metrics. In some cases, patients genomic DNA was screened for sequence variations (large deletions, insertions and duplications) by Multiplex Ligation-dependent Probe Amplification (MCR Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.4196G > A, p.(Arg1399His)

      HGVS: NM_000552.5:c.4196G>A (p.Arg1399His)

      ClinVarID: 293

      CAID: CA114133

      gnomAD: MAF of 0.01540 (456/29604 alleles) in Ashkenazi Jewish population https://gnomad.broadinstitute.org/variant/chr12-6019222-C-T?dataset=gnomad_r4

      Variant: c.4414G > C p.(Asp1472His)

      HGVS: NM_000552.5:c.4414G>C (p.Asp1472His)

      ClinVarID: 256679

      CAID: CA6402534

      gnomAD: MAF of 0.5076 (38011/74882 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-6019004-C-G?dataset=gnomad_r4

    1. III-3,

      Case: Patient III-3 (proband's granduncle; father of IV-2 and IV-3) DiseaseAssertion: Type 2A VWD, based on low plasma VWF:Ag and activity and lack of plasma HMW VWF multimers (diagnosis explicitly extended to this patient along with proband and IV-2, IV-3, IV-4). FamilyInfo: Granduncle of proband V-2; father of IV-2 and IV-3 (both also affected); part of 5-affected-member pedigree (Fig. 1). ParentalGenotype(s): NA — his own parents' (generation II) genotype status not reported. CasePresentingHPOs: HP:0012147 (Reduced quantity of VWF; VWF:Ag 21.6 U/dL), HP:0030129 (Impaired VWF:RCo; VWF:Rco 5.0 U/dL), HP:0030132 (Absence of large VWF multimers — plasma), HP:0003645 (Prolonged partial thromboplastin time; APTT 45.5 sec) CaseHPOFreeText: Described only generically as having "abnormal bleedings" / "similar clinical symptoms" to the proband — no itemized bleeding symptoms given for this individual specifically. FVIII:C 28.0 U/dL (nv 50-150). RIPA not tested (N/A). TT 16.7 sec and PT 14.0 sec both within normal range. CaseNOTHPOs: NA CaseNOTHPOFreeText: Platelet-associated VWF multimers normal (HMW multimers present) per the group finding covering this patient. CasePreviousTesting: Targeted confirmation of the familial VWF variant; not genome-wide. GenotypingMethod: Sanger sequencing/allele-specific analysis, same platform as proband. PreviouslyPublished: NA Gene: VWF Variant: Same novel heterozygous in-frame 6-bp deletion, exon 28, ΔD1529V1530 (VWF A2 domain) HGVS: c.4585_4590del (p.Asp1529_Val1530del) ClinVarID: NA CAID: NA gnomAD: NA

    2. The proband was a 9-year-old boy, whose family pedigree is shown in Fig. 1. He suffered from frequent bruise, epistaxis, prolonged bleedings from small wounds, and delayed wound healing.

      Case: Patient V-2, Male, 9 years old (proband) DiseaseAssertion: Type 2A VWD, based on history of abnormal bleeding, low plasma VWF:Ag and activity, low FVIII:C, and lack of plasma HMW VWF multimers. FamilyInfo: Proband of a pedigree (Fig. 1) with 5 affected individuals (V-2, III-3, IV-2, IV-3, IV-4) across multiple generations, all carrying the same variant; unaffected father (IV-5) does not carry it. ParentalGenotype(s): Mother (IV-4) heterozygous for the variant, affected. Father (IV-5) does not carry the variant, unaffected (normal VWF:Ag 95.2 IU/dL, normal multimer pattern). CasePresentingHPOs: HP:0000421 (Epistaxis), HP:0001934 (Persistent bleeding after trauma — "prolonged bleedings from small wounds"), HP:0012147 (Reduced quantity of VWF; VWF:Ag 20.5 U/dL), HP:0030129 (Impaired VWF:RCo; VWF:Rco 6.2 U/dL), HP:0030132 (Absence of large VWF multimers — plasma), HP:0011871 (Impaired RIPA; 28.5%), HP:0003645 (Prolonged partial thromboplastin time; APTT 58.1 sec) CaseHPOFreeText: Frequent bruising, delayed wound healing (no matching HPO code in the approved list); FVIII:C 25.0 U/dL (nv 50-150); TT 16.7 sec and PT 14.2 sec both within normal range. CaseNOTHPOs: NA CaseNOTHPOFreeText: Platelet-associated VWF multimers were normal (HMW multimers present, indistinguishable from controls) despite the plasma multimer defect — supports a secretion defect rather than a synthesis defect. CasePreviousTesting: Not genome-wide; targeted VWF gene analysis — Sanger sequencing of all 52 exons and intron-exon boundaries of VWF using published primers, followed by allele-specific cloning (pMD18-T vector) and sequencing to resolve the heterozygous deletion. GenotypingMethod: Direct Sanger sequencing (Applied Biosystems 310 DNA analyzer) of all VWF exons/boundaries; PCR amplification and cloning of individual alleles into pMD18-T vector to confirm and characterize the heterozygous deletion. PreviouslyPublished: NA — first report of this variant/family. Gene: VWF Variant: Novel heterozygous in-frame 6-bp deletion in exon 28, removing residues D1529 and V1530 (ΔD1529V1530) in the VWF A2 domain. Functional studies (HEK293 transfection) showed the mutant is expressed but its secretion is markedly impaired (42±4% of WT in conditioned medium, p<0.01) with intracellular retention (174±29% of WT in cell lysate, p<0.05) and ER colocalization (PDI co-staining); co-transfection with WT VWF reduced WT secretion (61±16% of WT alone, p<0.05), indicating a dominant-negative effect. Classified as a "Group I" type 2A mechanism (impaired intracellular transport/secretion). HGVS: c.4585_4590del (p.Asp1529_Val1530del) — confirmed against the authors' GenBank submission (JN625247) and cross-validated against a real ClinVar-confirmed exon 28 variant ClinVarID: NA CAID: NA gnomAD: NA

    3. IV-3

      Case: Patient IV-3 (son of III-3; first cousin of proband's mother IV-4) DiseaseAssertion: Type 2A VWD, based on low plasma VWF:Ag and activity and lack of plasma HMW VWF multimers. FamilyInfo: Son of III-3 (proband's granduncle); first cousin of IV-4 (proband's mother); part of 5-affected-member pedigree (Fig. 1). ParentalGenotype(s): Father (III-3) heterozygous for the variant, affected. Mother's genotype not reported. CasePresentingHPOs: HP:0012147 (Reduced quantity of VWF; VWF:Ag 19.5 U/dL), HP:0030129 (Impaired VWF:RCo; VWF:Rco 7.6 U/dL), HP:0030132 (Absence of large VWF multimers — plasma), HP:0003645 (Prolonged partial thromboplastin time; APTT 45.2 sec) CaseHPOFreeText: Described only generically as having "abnormal bleedings" / "similar clinical symptoms" — no itemized bleeding symptoms given specifically for this individual. FVIII:C 29.0 U/dL (nv 50-150). RIPA not tested (N/A). TT 18.6 sec and PT 13.4 sec both within normal range. CaseNOTHPOs: NA CaseNOTHPOFreeText: Platelet-associated VWF multimers normal (HMW multimers present) per the group finding covering this patient. CasePreviousTesting: Targeted confirmation of the familial VWF variant; not genome-wide. GenotypingMethod: Sanger sequencing/allele-specific analysis, same platform as proband. PreviouslyPublished: NA Gene: VWF Variant: Same novel heterozygous in-frame 6-bp deletion, exon 28, ΔD1529V1530 (VWF A2 domain) HGVS: c.4585_4590del (p.Asp1529_Val1530del) ClinVarID: NA CAID: NA gnomAD: NA

    4. His mother also had a history of epistaxis, menorrhagia and anemia

      Case: Patient IV-4, Female (mother of proband V-2) DiseaseAssertion: Type 2A VWD, based on history of abnormal bleeding, low plasma VWF:Ag and activity, and lack of plasma HMW VWF multimers. FamilyInfo: Mother of proband V-2; part of 5-affected-member pedigree (Fig. 1). ParentalGenotype(s): Not described (her own parents' genotype status not reported in extracted text — see Figure 1). CasePresentingHPOs: HP:0000421 (Epistaxis), HP:0000132 (Menorrhagia), HP:0012147 (Reduced quantity of VWF; VWF:Ag 21.7 U/dL), HP:0030129 (Impaired VWF:RCo; VWF:Rco 5.0 U/dL), HP:0030132 (Absence of large VWF multimers — plasma), HP:0011871 (Impaired RIPA; 3.0%), HP:0003645 (Prolonged partial thromboplastin time; APTT 46.1 sec) CaseHPOFreeText: Anemia (secondary to menorrhagia; no matching HPO code in the approved list); FVIII:C not tested (N/A); TT 18.1 sec and PT 14.1 sec both within normal range. CaseNOTHPOs: NA CaseNOTHPOFreeText: Platelet VWF multimer status NOT tested for this patient ("Platelet samples were not available from IV-4") — do not assume the "normal platelet multimers" finding reported for the other four affected members applies here. CasePreviousTesting: Targeted confirmation of the familial VWF variant (not described as independent full 52-exon screening for this individual specifically); not genome-wide. GenotypingMethod: Sanger sequencing/allele-specific analysis, same platform as proband (Applied Biosystems 310 DNA analyzer). PreviouslyPublished: NA Gene: VWF Variant: Same novel heterozygous in-frame 6-bp deletion, exon 28, ΔD1529V1530 (VWF A2 domain) HGVS: c.4585_4590del (p.Asp1529_Val1530del) ClinVarID: NA CAID: NA gnomAD: NA

    5. IV-2

      Case: Patient IV-2 (daughter of III-3; first cousin of proband's mother IV-4) DiseaseAssertion: Type 2A VWD, based on low plasma VWF:Ag and activity and lack of plasma HMW VWF multimers. FamilyInfo: Daughter of III-3 (proband's granduncle); first cousin of IV-4 (proband's mother); part of 5-affected-member pedigree (Fig. 1). ParentalGenotype(s): Father (III-3) heterozygous for the variant, affected. Mother's genotype not reported. CasePresentingHPOs: HP:0012147 (Reduced quantity of VWF; VWF:Ag 30.4 U/dL), HP:0030129 (Impaired VWF:RCo; VWF:Rco 8.4 U/dL), HP:0030132 (Absence of large VWF multimers — plasma), HP:0003645 (Prolonged partial thromboplastin time; APTT 45.8 sec) CaseHPOFreeText: Described only generically as having "abnormal bleedings" / "similar clinical symptoms" — no itemized bleeding symptoms given specifically for this individual. FVIII:C 50.0 U/dL — at the exact lower limit of normal (nv 50-150), notably higher than the other affected members. RIPA not tested (N/A). TT 15.6 sec and PT 13.8 sec both within normal range. CaseNOTHPOs: NA CaseNOTHPOFreeText: Platelet-associated VWF multimers normal (HMW multimers present) per the group finding covering this patient. CasePreviousTesting: Targeted confirmation of the familial VWF variant; not genome-wide. GenotypingMethod: Sanger sequencing/allele-specific analysis, same platform as proband. PreviouslyPublished: NA Gene: VWF Variant: Same novel heterozygous in-frame 6-bp deletion, exon 28, ΔD1529V1530 (VWF A2 domain) HGVS: c.4585_4590del (p.Asp1529_Val1530del) ClinVarID: NA CAID: NA gnomAD: NA

    1. homozygous large deletion of exon 6

      Case: IP-1

      DiseaseAssertion: VWD3

      FamilyInfo: 6 additional family members, 5 heterozygous and 1 homozygous. All meet criteria of mild VWD1.

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: VWF antigen (VWF:Ag) of <1%, VWF ristocetin‐cofactor activity (VWF:RCo) of <6% and factor VIII activity (FVIII:C) of 5%

      CaseNOTHPOs: NA

      CaseNOTHPOFreeText: NA

      CasePreviousTesting: Direct sequencing of exons 2–52 including exon/intron boundaries of the VWF gene

      GenotypingMethod: multiple ligation‐dependent probe amplification (MLPA; using kit P011 and P012; MRC Holland, Amsterdam, the Netherlands) according to the manufacturer’s instructions. The PCR products were run on an ABI PRISM 3130XL sequencer with the GeneScan 500 LIZ size standard and analyzed using GeneMapper Software 5.0 (Applied Biosystems, Darmstadt, Germany). Dosage analysis based on a comparison between deleted and reference wild‐type DNA samples was performed using the Excel‐based software Coffalyser V9.4 (MRC Holland).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: deletion of exon 6

      HGVS:

      ClinVarID:

      CAID:

      gnomAD:

    2. large deletion of exons 33–34

      Case: IP-6

      DiseaseAssertion: VWD2

      FamilyInfo: Mother is unaffected carrier of F8 Asn2129Ser. The VWF deletion of exons 33-34 segregates in 5 other affected male family members including the father and a full brother of IP-6. The patient’s father displayed a significant decrease in VWF:Ag and VWF:RCo, 13% and 7%, respectively, FVIII: C of 18.5% and the VWF:RCo/VWF:Ag ratio of 0.5 pointing out to type 2 VWD.

      ParentalGenotype(s): Mother is heterozygous for F8FAsn2129Ser. Father is heterozygous for VWF deletion of exons 33-34.

      CasePresentingHPOs:

      CaseHPOFreeRext: VWF:Ag (17%), VWF:RCo (9%) and FVIII:C (1,9%). Bleedings in the oral cavity, ankle joint and hematomas.

      CaseNOTHPOs:

      CaseNOTHPOFreeText:

      CasePreviousTesting: Direct sequencing of exons 2–52 including exon/intron boundaries of the VWF gene

      GenotypingMethod: multiple ligation‐dependent probe amplification (MLPA; using kit P011 and P012; MRC Holland, Amsterdam, the Netherlands) according to the manufacturer’s instructions. The PCR products were run on an ABI PRISM 3130XL sequencer with the GeneScan 500 LIZ size standard and analyzed using GeneMapper Software 5.0 (Applied Biosystems, Darmstadt, Germany). Dosage analysis based on a comparison between deleted and reference wild‐type DNA samples was performed using the Excel‐based software Coffalyser V9.4 (MRC Holland).

      PreviouslyPublished: NA

      Gene:VWF

      Variant: deletion of exons 33-34

      HGVS:

      ClinVarID:

      CAID:

      gnomAD:

      MultipleGeneVariants:

      GeneName: F8

      Variant: Asn2129Ser

      ClinVarID or CAID:

      gnomAD:

    3. homozygous small deletion in exon 45 (p.Gln2551AlafsX16)

      Case: IP-2

      DiseaseAssertion: VWD3

      FamilyInfo: The mother reported no history of bleeding episodes and the laboratory data were in the border line of the normal range.

      ParentalGenotype(s): mother is heterozygous for the p.Gln2551AlafsX16 in the VWF gene

      CasePresentingHPOs: HP:0000421

      CaseHPOFreeRext: VWF:Ag <6%, VWF:RCo <6% and FVIII:C 2%. Clinically, repetitive severe epistaxis and subcutaneous hematomas were observed.

      CaseNOTHPOs:

      CaseNOTHPOFreeText:

      CasePreviousTesting: Direct sequencing of exons 2–52 including exon/intron boundaries of the VWF gene

      GenotypingMethod: multiple ligation‐dependent probe amplification (MLPA; using kit P011 and P012; MRC Holland, Amsterdam, the Netherlands) according to the manufacturer’s instructions. The PCR products were run on an ABI PRISM 3130XL sequencer with the GeneScan 500 LIZ size standard and analyzed using GeneMapper Software 5.0 (Applied Biosystems, Darmstadt, Germany).

      PreviouslyPublished: NA

      Gene: VWF

      Variant: p.Gln2551AlafsX16

      HGVS:

      ClinVarID:

      CAID:

      gnomAD:

      MultipleGeneVariants:

      GeneName: VWF

      Variant: whole gene deletion

      ClinVarID or CAID:

      gnomAD:

    1. Case presentation A 27-year-old woman

      Case: Proband, female, 27 years old at report; ethnicity not reported.

      DiseaseAssertion: VWD2A. The authors confirmed type 2A VWD based on VWF:Ac/VWF:Ag ratio <0.7 (excluding types 1C, 2N, and 3), RIPA negative for increased platelet affinity (excluding type 2B), and multimer analysis showing HMWM deletion with IMWM reduction (excluding type 2M).

      FamilyInfo: The patient denied a family history of abnormal bleeding. The father carried VWF c.2281+1G>A and was not diagnosed with VWD (VWF:Ag 61%, VWF:Ac 60.6%, FVIII activity 82%, VWF:Ac/VWF:Ag ratio 0.9). The mother carried VWF c.4654T>A and was diagnosed by the authors as having low VWF per British Committee for Standards in Haematology criteria (VWF:Ag 40%, VWF:Ac 26.6%, FVIII activity 66%, VWF:Ac/VWF:Ag ratio 0.6). Neither parent had a history of abnormal bleeding. Parental laboratory results and genotypes are reported in Table 2.

      ParentalGenotype: Both parents were genotyped. The father was heterozygous for c.2281+1G>A and the mother was heterozygous for c.4654T>A (Table 2). The authors report that the two variants were inherited separately from each parent, establishing compound heterozygosity. Note: Figure 2 shows Sanger sequencing validation for c.2281+1G>A only, confirming the variant in the patient and father and a normal genotype at that locus in the mother. No confirmatory sequencing trace is shown for the maternal c.4654T>A variant; that genotype is reported only in Table 2.

      CasePresentingHPOs: HP:0000421, HP:0000132, HP:0004846, HP:0012147, HP:0030132, HP:0011871 (Epistaxis, Menorrhagia, Prolonged bleeding after surgery, Reduced quantity of VWF, Absence of large von Willebrand factor multimers, Impaired RIPA)

      CaseHPOFreeText: Gingival bleeding persisted for two days after tooth extraction. History of frequent epistaxis and one episode of heavy menorrhagia in 2007 treated with plasma transfusion. ISTH-BAT bleeding score 7 (epistaxis score 1, bleeding after tooth extraction score 2, heavy menorrhagia with plasma transfusion score 4). VWF:Ag 26.2%, VWF:Ac 5.7%, FVIII activity 43%, VWF:Ac/VWF:Ag ratio 0.21. Low-concentration RIPA 23.7% (reference 30.0-70.0%). VWF multimer analysis demonstrated deletion of high-molecular-weight multimers and reduction of intermediate-molecular-weight multimers (Figure 1). Arachidonic acid-induced platelet aggregation was impaired, with a maximal aggregation rate of 14.3%.

      CaseNotHPOs: HP:0003645, HP:0001873 (Prolonged partial thromboplastin time, Thrombocytopenia)

      CaseNotHPOFreeText: APTT 39.2 s (reference 32.0-45.0), platelets 183x10^9/L (reference 125-350), PT 13.6 s (reference 11.0-15.0), and fibrinogen 2.71 g/L (reference 2.0-4.0) were all within reference ranges, as was thrombin time. High-concentration RIPA 52.9% (reference 40.0-80.0), normal. Systemic physical examination unremarkable with no active bleeding on admission. Prior laparoscopic surgery for luteal rupture without a remarkable increase in bleeding. Hemoglobin 125 g/L was marginally below the stated reference range (130-175), although the authors described the complete blood count as normal.

      CasePreviousTesting: Whole-exome sequencing was performed, which is a genome-wide method. No genes other than VWF were reported as tested or implicated. No earlier molecular genetic testing was reported.

      GenotypingMethod: Whole-exome sequencing followed by one-generation (Sanger) sequencing validation, performed on the proband and both parents.

      Variant 1

      Gene: VWF

      Variant: c.2281+1G>A, heterozygous, inherited from the father. Intron 17 canonical splice donor site; the authors describe the affected region as lying between the D2 and D' domains. Classified as pathogenic by the authors per ACMG guidelines.

      HGVS: NM_000552.5:c.2281+1G>A

      ClinVar: NA

      CAID: CA383523243

      gnomAD: Absent (gnomAD v4.1.1; variant not found, region adequately covered)

      Variant 2

      Gene: VWF

      Variant: c.4654T>A (p.Phe1552Ile), heterozygous, inherited from the mother. Exon 28, A2 domain; missense. Classified as a variant of uncertain significance by the authors per ACMG guidelines. Note: the article gives the protein consequence as p.Phe1152Ile in the Case Presentation and p.Phe1552Ile in the Discussion; these are internally inconsistent. p.Phe1552Ile is correct, as confirmed by HGVS validation and by the ClinGen Allele Registry record (NP_000543.3:p.Phe1552Ile), and is consistent with the stated exon 28 location.

      HGVS: NM_000552.5:c.4654T>A (p.Phe1552Ile)

      ClinVar: NA

      CAID: CA383500446

      gnomAD: Absent (gnomAD v4.1.1; variant not found, region adequately covered)

    1. Case#: Elayaperumal_2018_V-270 , F, 1.5 y.o. (onset), origin in India

      DiseaseAssertion: VWD type 3

      FamilyInfo: consanguinity, no family history of bleeding

      ParentalGenotype: not reported

      CasePresentingHPOs:

      CaseHPOFreeText: bleeding score of 3, VWF:Ag of 0, FVIII:C 6.2%

      CaseNotHPOs:

      CaseNotHPOFreeText:

      CasePreviousTesting: not reported

      GenotypingMethod: CSGE and Sanger sequencing of VWF gene only.

      Gene: VWF

      Variant: homozygous c.3656delC (p.Pro1219Leufs*34)

      HGVS: NM_000552.3:c.3656delC

      ClinVarID: not found

      CAID:unable to register- system not processing 2/3/23

      gnomAD: not found

      MultipleGeneVariants: n/a

    2. Case#: Elayaperumal_2018_V-281, M, 2 y.o. (onset), origin in India

      DiseaseAssertion: VWD type 3

      FamilyInfo: Consanguinity, no family history of bleeding

      ParentalGenotype: not reported

      CasePresentingHPOs:

      CaseHPOFreeText: bleeding score of 9, VWF:Ag of 0, FVIII:C of 3.5%

      CaseNotHPOs:

      CaseNotHPOFreeText:

      CasePreviousTesting: not reported

      GenotypingMethod: CSGE and Sanger sequencing of VWF gene only.

      Gene: VWF

      Variant: homozygous c.4696C>T (p.Arg1566*)

      HGVS: NM_000552.3:c.4696C>T

      ClinVarID: 100382

      CAID: CA228639

      gnomAD: MAF of 0.00001762 (2/113480 alleles, European non-Finnish) https://gnomad.broadinstitute.org/variant/12-6127888-G-A

      MultipleGeneVariants: n/a

    3. Case#: Elayaperumal_2018_V-260 , M, 3y.o. (onset), origin in India

      DiseaseAssertion: VWD type 3

      FamilyInfo: consanguinity reported. No family history of bleeding

      ParentalGenotype: not reported

      CasePresentingHPOs:

      CaseHPOFreeText: bleeding score of 9, VWF:Ag of 0, FVIII:C of 7.4%

      CaseNotHPOs:

      CaseNotHPOFreeText:

      CasePreviousTesting: not reported

      GenotypingMethod: CSGE and Sanger sequencing of VWF gene only.

      Gene: VWF

      Variant: homozygous c.665G>A (p.Trp222*)

      HGVS: NM_000552.3:c.665G>A

      ClinVarID: not found

      CAID: CA383509511

      gnomAD: not found

      MultipleGeneVariants: n/a

    1. Type 3 Von Willebrand Disease: A Case Report of a Rare Entity

      Gene: VWF

      HGNCID: 12726

      Case: 4 month old female

      DiseaseAssertion: VWD type 3

      FamilyInfo: both parents were sequenced ParentalGenotype(s): mother is VWF:c.2435delC carrier, father was negative

      CasePresentingHPOs: HP:0011889 CaseHPOFreeRext: bleeding from injection site following vaccination administration CaseNOTHPOs: CaseNOTHPOFreeText: normal PT/PTT at 4 months. prolonged PTT, normal PT and platelet count upon repeat. Factor VIII levels <1%, VWF activity <15%

      GenotypingMethod: unknown

      Gene: VWF

      Variant: c.2435delC in VWF gene, deletion in exon 6 of VWF gene

      HGVS: NM_000552.5:c.2435del

      ClinVarID: 303

      gnomAD: 0.00007187 (116/1613916) https://gnomad.broadinstitute.org/variant/12-6044297-CG-C?dataset=gnomad_r4

    1. the affected son (III-1)

      Case: Patient III-1, Male, 43 years (as of Dec 2010 follow-up) DiseaseAssertion: VWD type 2A, phenotype IIC ("VWD2AIIC-Miami"). Bleeding score 9 (elevated; nv <4). FamilyInfo: Son of II-3; part of 4-member, 2-generation pedigree, dominant transmission. ParentalGenotype(s): Mother (II-3) heterozygous for the variant, affected. Father's genotype not tested/not reported. CasePresentingHPOs: HP:0000421 (Epistaxis), HP:0001934 (Persistent bleeding after trauma — bleeding from minor wounds), HP:0004846 (Prolonged bleeding after surgery — post-surgical bleeding, bleeding at tooth extraction), HP:0030130 (Impaired VWF collagen binding activity; VWF:CB/Ag ratio 0.14, nv ≥0.8), HP:0030129 (Impaired VWF:RCo; VWF:RCo/Ag ratio 0.18, nv ≥0.8), HP:0030132 (Absence of large VWF multimers) CaseHPOFreeText: VWF:Ag markedly ELEVATED at 2.72× normal (nv 0.5-1.6) — highest of the four patients. Absolute VWF:RCo 0.40 and VWF:CB 0.37 (both below the ≥0.5 absolute threshold, so reduced in both absolute and ratio terms, unlike II-3). VWF:GPIbα binding 0.55 absolute / 0.20 ratio. FVIII:C 0.99 (normal, nv ≥0.6) with reduced FVIII-binding ratio (F8Br 0.49, nv ≥0.6). VWF propeptide:Ag ratio (ppr) 0.32, markedly reduced (nv 0.8-2.2). PFA-100 closure times markedly prolonged (both >300 sec). Hematoma and oral cavity bleeding also reported. No menorrhagia (not applicable, male). CaseNOTHPOs: NA CaseNOTHPOFreeText: NA CasePreviousTesting: Same family-wide testing history as Patient II-3 (extensive prior negative Sanger sequencing, causative variant found only via MLPA); not genome-wide. GenotypingMethod: Same as Patient II-3 — MLPA plus confirmatory RT-PCR/sequencing. PreviouslyPublished: PMID 8324222 (Ledford et al. 1993) — same family as originally reported. Gene: VWF Variant: Heterozygous complex in-frame duplication of VWF exons 9-10 (same variant as Patient II-3). HGVS: NM_000552.3:c.998_1156dup (p.Glu333_Pro385dup) ClinVarID: NA CAID: NA gnomAD: NA

    2. III-3

      Case: Patient III-3, Female, 41 years (as of Dec 2010 follow-up) DiseaseAssertion: VWD type 2A, phenotype IIC ("VWD2AIIC-Miami"). Bleeding score 14 (elevated; nv <4). FamilyInfo: Daughter of II-3; part of 4-member, 2-generation pedigree, dominant transmission. ParentalGenotype(s): Mother (II-3) heterozygous for the variant, affected. Father's genotype not tested/not reported. CasePresentingHPOs: HP:0000421 (Epistaxis), HP:0000132 (Menorrhagia), HP:0001934 (Persistent bleeding after trauma — bleeding from minor wounds), HP:0004846 (Prolonged bleeding after surgery — bleeding at tooth extraction), HP:0030130 (Impaired VWF collagen binding activity; VWF:CB/Ag ratio 0.12, nv ≥0.8), HP:0030129 (Impaired VWF:RCo; VWF:RCo/Ag ratio 0.15, nv ≥0.8), HP:0030132 (Absence of large VWF multimers) CaseHPOFreeText: VWF:Ag ELEVATED at 1.78× normal (nv 0.5-1.6) — least elevated of the four, though still above range. Absolute VWF:RCo 0.27 and VWF:CB 0.22 (both below the ≥0.5 absolute threshold). VWF:GPIbα binding 0.35 absolute / 0.20 ratio. FVIII:C 0.75 (normal, nv ≥0.6) with reduced FVIII-binding ratio (F8Br 0.50, nv ≥0.6). VWF propeptide:Ag ratio (ppr) 0.57, reduced (nv 0.8-2.2). PFA-100 closure times markedly prolonged (Epinephrine >300 sec, ADP >284 sec). No explicit mention of post-surgery bleeding for this patient specifically (unlike II-3 and III-1). CaseNOTHPOs: NA CaseNOTHPOFreeText: NA CasePreviousTesting: Same family-wide testing history as Patient II-3; not genome-wide. GenotypingMethod: Same as Patient II-3 — MLPA plus confirmatory RT-PCR/sequencing. PreviouslyPublished: PMID 8324222 (Ledford et al. 1993) — same family as originally reported. Gene: VWF Variant: Heterozygous complex in-frame duplication of VWF exons 9-10 (same variant as Patient II-3. HGVS: NM_000552.3:c.998_1156dup (p.Glu333_Pro385dup) ClinVarID: NA CAID: NA gnomAD: NA

    3. The affected mother (II-3), the two affected daughters (III-3 and III-5) and the affected son (III-1) of the original family with VWD type IIC Miami were available for our study

      Case: Patient II-3, Female, 67 years (as of Dec 2010 follow-up) DiseaseAssertion: VWD type 2A, phenotype IIC ("VWD2AIIC-Miami") — a historically named variant of type 2A characterized by paradoxically elevated VWF:Ag with reduced function; dominantly inherited in this family (unlike classic/most VWD2AIIC, which is recessive). Bleeding score 21 (very high; nv <4). FamilyInfo: Mother of III-1, III-3, and III-5 (all three affected); 4-member, 2-generation pedigree, dominant transmission. ParentalGenotype(s): NA — her own parents not part of this study. CasePresentingHPOs: HP:0000421 (Epistaxis), HP:0000132 (Menorrhagia), HP:0001934 (Persistent bleeding after trauma — bleeding from minor wounds), HP:0004846 (Prolonged bleeding after surgery — post-surgical bleeding, bleeding at tooth extraction), HP:0030130 (Impaired VWF collagen binding activity; VWF:CB/Ag ratio 0.18, nv ≥0.8), HP:0030129 (Impaired VWF:RCo; VWF:RCo/Ag ratio 0.22, nv ≥0.8), HP:0030132 (Absence of large VWF multimers) CaseHPOFreeText: VWF:Ag markedly ELEVATED at 2.50× normal (nv 0.5-1.6). Absolute VWF:RCo 0.54 and VWF:CB 0.46 (both near/within the lower end of normal in absolute terms, nv ≥0.5, but severely reduced relative to the elevated antigen). VWF:GPIbα binding 0.74 absolute / 0.30 ratio. FVIII:C 1.08 (normal, nv ≥0.6) with reduced FVIII-binding ratio (F8Br 0.61, at threshold, nv ≥0.6). VWF propeptide:Ag ratio (ppr) 0.71, reduced (nv 0.8-2.2) — indicates decreased clearance of mature VWF relative to propeptide. PFA-100 closure times markedly prolonged (Epinephrine and ADP both >300 sec, nv ≤165/≤118). Hematoma (bruising) and oral cavity bleeding also reported. Post-partum bleeding ultimately requiring hysterectomy. Historical DDAVP test performed in this patient specifically showed findings consistent with delayed VWF clearance. Oral contraceptive/desmopressin use not specified. CaseNOTHPOs: NA CaseNOTHPOFreeText: NA CasePreviousTesting: Extensive prior negative testing — partial sequencing in the original 1993 study plus subsequent complete Sanger sequencing of all VWF coding exons by multiple independent groups over ~20 years found no candidate mutation. The causative variant was only found via MLPA (multiplex ligation-dependent probe amplification), which detects copy-number changes that exon sequencing alone misses. Not genome-wide; VWF-targeted. GenotypingMethod: MLPA identified signal gain at exons 9-10 in all 4 family members; confirmed by duplication-junction-specific RT-PCR (sense primer in exon 10, antisense in exon 9) and by RT-PCR/sequencing across exons 8-11. Full genomic characterization (PCR primer walking, RepeatMasker, MFold in silico DNA-folding analysis) defined a complex rearrangement: a 5,047 bp duplication (intron 8 through part of intron 10, including exons 9 and 10) plus two deletions (1,348 bp and 2,301 bp) within intron 10, apparently mediated by inverted Alu repeat elements (proposed mechanism: replication slippage for the duplication, a stable Alu3/Alu4 inverted-repeat DNA secondary structure for the deletion). PreviouslyPublished: PMID 8324222 (Ledford MR, Rabinowitz I, Sadler JE, Kent JW, Civantos F. "New variant of von Willebrand disease type II with markedly increased levels of von Willebrand factor antigen and dominant mode of inheritance: von Willebrand disease type IIC Miami." Blood. 1993;82:169-75) — this is the original report of this same family. Gene: VWF Variant: Heterozygous complex in-frame duplication of VWF exons 9-10 (net transcript-level effect), D1 domain (VWF propeptide region). Recombinant expression studies (not patient-specific, applies to the variant generally): "homozygous" mutant VWF secreted only as dimers (no higher-order multimers); co-expression with WT VWF reproduced the patients' plasma multimer pattern exactly; mutant retained in unusually large intracellular granules colocalizing with PDI in the ER; ADAMTS13 proteolysis was not resistant, but an aberrant extra proteolytic band appeared in both patient plasma and recombinant mutant; infusion of recombinant mutant VWF into VWF-/- mice showed significantly prolonged half-life vs. WT (mean residence time 3.15h vs 1.90h, p=0.015), supporting decreased clearance as the mechanism for the paradoxically elevated VWF:Ag. HGVS: NM_000552.3:c.998_1156dup (p.Glu333_Pro385dup) ClinVarID: NA CAID: NA gnomAD: NA

    1. IPType 1 VWDc.7464C>T11A1>3009635Normal multimer size distribution*

      Case: Female, Caucasian, 11 years at diagnosis

      DiseaseAssertion: VWD1

      FamilyInfo: Non-consanguineous family, parents carry no bleeding history but have risk factors (prolonged closure time and modestly decreased VWF:Ag level)

      ParentalGenotype(s): Mother has c.7464C>T, Father carries no mutation.

      CasePresentingHPOs: HP:0000421, HP:0000978, HP:0001934, HP:0030140, HP:0004846, HP:0006298

      CaseHPOFreeText: Cumulative bleeding score of 17, Reduced VWF:Ag of 9IU/dL, VWF:GPIb of 6 I/dL, and factor VIII coagulant activity of 35 IU/dL, prolonged PFA closure time of >300 and reduced concentration of all multimers.

      CaseNOTHPOs: None reported

      CaseNOTHPOFreeText: Normal multimer size distribution (tested in Agarose gel)

      CasePreviousTesting: NA

      GenotypingMethod: Direct sequencing of genomic DNA exons 1 to 52, exon/intron boundaries, 5' and 3' UTR, promoter region, and whole intron 44 of VWF. RT-PCR followed by sequencing of cDNA to detect splicing defect due to c.7464C>T.

      PreviouslyPublished: PMID:22871923

      Gene: VWF

      Variant: c.7464C>T

      HGVS: NM_000552.5:c.7464C>T (p.Gly2488=)

      ClinVarID: 619755

      CAID: CA232284628

      gnomAD: 0.000008799 MAF in European (non-Finnish) and 0.000008664 MAF in XX. https://gnomad.broadinstitute.org/variant/12-6080849-G-A

    1. V‐138

      Case#: Elayaperumal_2018_V-138, F, 2 y.o. (onset), origin in India

      DiseaseAssertion: VWD type 3

      FamilyInfo: Consanguinity, family history of bleeding

      ParentalGenotype: not reported

      CasePresentingHPOs:

      CaseHPOFreeText: bleeding score of 19, VWF:Ag of 0, FVIII:C of 1.9%

      CaseNotHPOs:

      CaseNotHPOFreeText:

      CasePreviousTesting: not reported

      GenotypingMethod: CSGE and Sanger sequencing of VWF gene only.

      Gene: VWF

      Variant: Heterozygous c.3379+1G>A

      HGVS: NM_000552.3:c.3379+1G>A

      ClinVarID: 100257

      CAID: CA228398

      gnomAD: MAF 0.0001508 (3/19892 alleles, East Asian population) https://gnomad.broadinstitute.org/variant/12-6132796-C-T

      MultipleGeneVariants: Since this patient was reportedly heterozygous, they should have another variant. However, only one was reported.

    2. V‐136

      Case#: Elayaperumal_2018_ , M, 4 y.o. (onset), origin in India

      DiseaseAssertion: VWD type 3

      FamilyInfo: Consanguinity, no family history

      ParentalGenotype: not reported

      CasePresentingHPOs:

      CaseHPOFreeText: bleeding score of 14. VWF:Ag 0.83, FVlll:C of 1.9%.

      CaseNotHPOs:

      CaseNotHPOFreeText:

      CasePreviousTesting: not reported

      GenotypingMethod: CSGE and Sanger sequencing of VWF gene only.

      Gene: VWF

      Variant: homozygous c.757_770del

      HGVS: NM_000552.3:c.757_770del (p.Thr253Cysfs*45)

      ClinVarID: not found

      CAID: CAR unable to parse. Error: unknown

      gnomAD: not found

      MultipleGeneVariants: not reported

    3. V‐144

      Case#: Elayaperumal_2018_V-144, M, 1 y.o. (onset), origin in India

      DiseaseAssertion: VWD type 3

      FamilyInfo: consanguinity, family history of bleeding

      ParentalGenotype: not reported

      CasePresentingHPOs:

      CaseHPOFreeText: bleeding score of 7, VWF:Ag of 0, FVIII:C of 5.9%

      CaseNotHPOs:

      CaseNotHPOFreeText:

      CasePreviousTesting: not reported

      GenotypingMethod: CSGE and Sanger sequencing of VWF gene only.

      Gene: VWF

      Variant: homozygous c.1117C>T (p.Arg373*)

      HGVS: NM_000552.3:c.1117C>T

      ClinVarID: 100175

      CAID: CA228261

      gnomAD: MAF of 0.0001309 (4/30550 alleles, South Asian population) https://gnomad.broadinstitute.org/variant/12-6180502-G-A

      MultipleGeneVariants:

      Note: previously reported in LOVD

    4. V‐115

      Case#: Elayaperumal_2018_V-115, female, 1 year old (onset), origin in India

      DiseaseAssertion: VWD type 3

      FamilyInfo: consanguinity

      ParentalGenotype: not reported. family history of bleeding.

      CasePresentingHPOs:

      CaseHPOFreeText: bleeding score of 13. VWF:Ag of 0. FVIII:C of 1.9%

      CaseNotHPOs:

      CaseNotHPOFreeText:

      CasePreviousTesting: not reported

      GenotypingMethod: CSGE and Sanger sequencing of VWF only.

      Gene: VWF

      Variant: homozygous c.6321G>A (p.Trp2107*)

      HGVS: NM_000552.3:c.6321G>A (p.Trp2107*)

      ClinVarID: not found

      CAID: CA383491677

      gnomAD: not found

      MultipleGeneVariants: not reported

    1. Type 1 von Willebrand Disease in a Pediatric Patient Caused by a Novel Heterozygous Deletion of Exons 1 to 6 of the von Willebrand Factor Gene: A Case Report

      PMID: 36468906

      Gene: VWF

      HGNCID: 12726

      Case: 6 year old boy living in Croatia

      DiseaseAssertion: type 1 VWD

      FamilyInfo: family history of bleeding disorders

      CasePresentingHPOs: HP:0000421, HP:0011889, HP:0000978, HP:0008151

      CaseHPOFreeRext: VWF:GPIbM = 23.6% (decreased), VWF"Ag = 24.7% (decreased), VWF:GPIbM/VWF:Ag (ratio) = 0.96, FVIII = 54.0% (normal), VWF:CB = 24.2% (decreased)

      GenotypingMethod: NGS, MLPA

      Gene: VWF

      Variant: heterozygous deletion of exons 1-6 within the VWF gene

    1. type 3‐VWD patient

      Case:44‐year‐old male patient

      DiseaseAssertion:type 3‐VWD patient

      FamilyInfo:positive family hsiory: The proband and his sister both had low FVIII:C (1 IU/dL) and VWF:Ag (3 IU/dL) levels, confirming the diagnosis of type 3 VWD. His father had nearly normal levels of FVIII:C (58 IU/dL) and VWF:Ag (57 IU/dL). His daughter had type 1 VWD with decreased FVIII:C (46 IU/dL) and VWF:Ag (19 IU/dL)., NGS identified a heterozygous VWF c.2328delT (p.A778Lfs*23) frame shift mutation only in the proband and his sister

      ParentalGenotype(s):VWF missense mutation, c.6521G > T (p.C2174F), was found heterozygous in father, but mother not tested

      CasePresentingHPOs:BAT score=16, Arterial thrombosis=ischemic stroke, FVIII:C*=1, VWF:Ag=3, Proein S:58, Protein C:100, antithrombin III=106, activated protein C resistance:2.9. CaseHPOFreeRext: Complete blood count showed normocytic anemia (hemoglobin 74 g/L), normal white cell (and differential), and platelet counts. He had prolonged activated partial thromboplastin time (APTT) (89.4 s (s) [reference range (RR), 28.0–44.0 s]) with greatly decreased FVIII:C (1 IU/dL) and VWF:Ag (3 IU/dL) (Table 1). Abdominal ultrasound scanning revealed fatty liver, normal gallbladder, spleen, pancreas, and kidneys. Four hundred ml of virus inactivated fresh frozen plasma (FFP) was transfused, and his VWF:Ag increased to 6 IU/dL. On Day 2 after admission, the patient abruptly experienced numbness and weakness in his right limb.

      CaseNOTHPOs:

      CaseNOTHPOFreeText:

      CasePreviousTesting:n.a

      GenotypingMethod:NGS

      PreviouslyPublished: If applicable.

      Gene: VWF

      Variant:c.2328delT (p.A778Lfs*23) and c.6521G > T (p.C2174F)

      HGVS:n.a.

      ClinVarID:n.a.

      CAID:n.a.

      gnomAD: n.a.

    1. A Novel Case of Compound Heterozygous Type 3Von Willebrand Disease

      PMID: unknown

      Gene: VWF

      HGNCID: 12726

      Case: 2 year old female

      DiseaseAssertion: type 3 VWD

      FamilyInfo: 27 year old parents with no history of abnormal bleeding, non-consanguineous. Older brother (4 years old) with symptoms, younger brother asymptomatic.

      ParentalGenotype(s): Mother is heterozygous for c.2345del variant. Father is heterozygous for exon 6 deletion.

      CasePresentingHPOs: HP:0001934, HP:0000978, HP:0000225, HP:0001058, HP:0001058, HP:0012147, HP:0030132

      CaseHPOFreeRext: reduced VWF activity

      CaseNOTHPOs: HP:0001873, HP:0008151

      CaseNOTHPOFreeText: reduced factor VIII

      CasePreviousTesting: n/a

      GenotypingMethod: unknown

      PreviouslyPublished: n/a

      Gene: VWF

      Variant: compound heterozygous c2345delC in exon 18 and deletion in exon 6

      HGVS: NM_000552.5:c.2435del p. (Pro812ArgfsTer31)

      ClinVarID: 303

      CAID:

      gnomAD: 0.00007187 (11/1613916 alleles) https://gnomad.broadinstitute.org/variant/12-6044297-CG-C?dataset=gnomad_r4

    1. III-1

      III-1, Female 10 years old

      disease assertion: VWD

      **positive family history **

      Parental Genotype: each has heterozygous, 3251G>A

      CasePresentingHPOs: CaseHPOFreeText: BS 4, VWF Ag:0.38, *VWF:GPIbM:0.15,VWF:CB:0.13, VWFpp :0.76, FVIII:C:0.10

      CaseNOTHPOs:* N.a.

      CaseNOTHPOFreeText: n.a.

      CasePreviousTesting: *GenotypingMethod: Sanger seqencing;

      *PreviouslyPublished:n.a.

      Gene:VWF Variant:c.3251G>A*

      *HGVS:NM_000552.5:c.3251G>A

      • *ClinVarID:Variation ID: 626952

      *CAID:n.a.

      *gnomAD:n.a.

    1. The 26-year-old female IP is diagnosed to have type 3 VWD, due to no detectable VWF in plasma (VWF antigen (VWF:Ag) level < 4%).

      Case: Index Patient (IP), Female, 26 years old; described as from a genetically isolated population (not further specified), consistent with elevated homozygosity rates in that population. DiseaseAssertion: Type 3 VWD, confirmed by VWF:Ag <4 IU/dL (virtual absence of VWF). FamilyInfo: NA — no relatives' bleeding history or genotype reported ParentalGenotype(s): NA (not tested/not reported) CasePresentingHPOs: HP:0000421 (Epistaxis — frequent nosebleeds), HP:0000132 (Menorrhagia — heavy, prolonged, led to iron-deficiency anemia), HP:0001934 (Persistent bleeding after trauma — bleeding following injury), HP:0012147 (Reduced quantity of VWF; VWF:Ag <4 IU/dL), HP:0030129 (Impaired VWF:RCo-type activity; VWF:GPIbM <4 IU/dL) CaseHPOFreeText: Easy bruising (no matching HPO code in the approved list); FVIII:C 2.0 IU/dL (nv 70–157); referred to Hemophilia Centre at age 1 for bleeding complications; declined recommended lifelong prophylaxis due to injection discomfort, later underwent prophylaxis with plasma-derived VWF/FVIII concentrates and on-demand treatment (tranexamic acid, oral contraceptives, replacement therapy). Supporting functional evidence from patient-derived endothelial colony-forming cells (ECFCs): virtual absence of VWF mRNA (RQ ~0.04–0.05 vs. 1.00 in healthy controls, across 4 primer/probe sets); VWF secretion into ECFC medium 6.2% ± 0.4% of healthy controls (p<0.0001); near-total absence of Weibel-Palade bodies on immunofluorescence (only 1–3 small WPBs seen in some cells vs. normal stick-shaped WPBs in controls); altered intracellular trafficking of angiopoietin-2 (WPB inflammatory cargo) in the absence of WPBs. CaseNOTHPOs: NA CaseNOTHPOFreeText: NA CasePreviousTesting: Routine testing (Sanger sequencing of coding exons, ~50 bp flanking intronic regions, promoter, 5'/3'-UTR, plus MLPA) was negative — patient was "mutation-negative" prior to this study. Not genome-wide; targeted to VWF only, but comprehensive: this study's NGS covered the entire 176 kb VWF locus (all 52 exons, full intronic regions, promoter) at 30x coverage, going well beyond standard exon+flanking-intron approaches specifically to find deep intronic variants. GenotypingMethod: Illumina NovaSeq 6000 NGS (2×150 bp reads) of the whole VWF genomic region; variant annotation via Ensembl VEP with SpliceAI, PolyPhen-2, SIFT; splice effect independently confirmed with Neural Network Splicing, ASSP, and MaxEnt/HSF prediction tools. Functional validation via patient-derived ECFCs: RT-qPCR of VWF mRNA (4 primer/probe sets), cDNA sequencing, VWF:Ag ELISA of ECFC secretion, immunofluorescence microscopy, and whole-transcriptome RNA-seq. PreviouslyPublished: NA — no indication this patient was reported elsewhere; paper explicitly frames this variant/mechanism as a first report. Gene: VWF Variant: Novel homozygous deep intronic variant, intron 8, creating a new donor splice site that outcompetes the native donor site, causing inclusion of a 118-bp pseudoexon, frameshift, premature stop codon, and nonsense-mediated decay of the transcript. HGVS: NM_000552.5:c.997+118T>G (confirmed via ClinGen Allele Registry Community Standard Title; not explicitly stated in the paper's main text, which only gives cDNA/genomic coordinates without a transcript version). Genomic: g.6073501A>C (GRCh38/hg38; note the T>G/A>C discrepancy reflects VWF being transcribed from the minus strand of chr12). ClinVarID: NA CAID: CA3275979827 gnomAD: NA

    1. 55-year-old Italian man

      Case: 55-year-old Italian, male

      DiseaseAssertion: VWD, Type 2B

      FamilyInfo: Patient did not report any family history of bleeding and his daughter did not show any menorrhagia and hemorrhagic disorder. Genotyping for daughter was negative for variants of interest. Paternity of daughter established. Testing performed on both daughter and wife.

      ParentalGenotype(s): No genotyping available on parents, as they were deceased.

      CasePresentingHPOs: HP:0000421, HP:0004846, HP:0012147, HP:0030129, HP:0030130, . HP:0030132, HP:0011871, HP:0003645

      CaseHPOFreeRext: aPTT,s=45.4, Fibrinogen,mg/dL=349, VFG:Ag, IU/dL=23.4, VWF:RCo, IU/dL=8.5, VWF:CBA, IU/dL=7.2, FVIII:C, IU/dL=28.2, VWFpp, %=63.4, VWF:RCo/VWF:Ag =0.36, VWF:CBA/VWF:Ag=0.31, VWFpp/VWF:Ag=2.7, FVIII/VWF:Ag=1.2,FVIII/VWF:binding, %=127.8, ADAMTS-13 act, U/dL=110.1, Platelets, ×109/L=121-166, Hb, g/dL=8.1-15.1, Blood group= A-Rh +Rh phenotype: ccDEe Kell/Cellano phenotype: kk

      CaseNOTHPOs: none

      CaseNOTHPOFreeText: none

      CasePreviousTesting: none

      GenotypingMethod: Molecular genetic analysis of the VWF gene was performed using 3100-Avant Genetic Analyzer. Sanger-sequencing procedures were carried out to validate the identified genetic variants.

      PreviouslyPublished:

      1) PMID: 27007659

      2) PMID: 20492463

      Gene: VWF

      Variant:

      1) c.2771G>A p.R924Q, exon 21, D′D3 domain,cis heterozygous

      2) c.6532G>T p.A2178S, exon 37, cis heterozygous

      HGVS:

      1) NC_000012.12:g.6031493C>T, NC_000012.11:g.6140659C>T, NG_009072.2:g.98178G>A, NM_000552.5:c.2771G>A, NM_000552.4:c.2771G>A, NM_000552.3:c.2771G>A, XM_047429501.1:c.2771G>A, NP_000543.3:p.Arg924Gln, XP_047285457.1:p.Arg924Gln

      2) NC_000012.12:g.5993928C>A, NC_000012.12:g.5993928C>T, NC_000012.11:g.6103094C>A, NC_000012.11:g.6103094C>T, NG_009072.2:g.135743G>T, NG_009072.2:g.135743G>A, NM_000552.5:c.6532G>T, NM_000552.5:c.6532G>A, NM_000552.4:c.6532G>T, NM_000552.4:c.6532G>A, NM_000552.3:c.6532G>T, NM_000552.3:c.6532G>A, XM_047429501.1:c.6532G>T, XM_047429501.1:c.6532G>A, NP_000543.3:p.Ala2178Ser, NP_000543.3:p.Ala2178Thr, XP_047285457.1:p.Ala2178Ser, XP_047285457.1:p.Ala2178Thr

      ClinVarID:

      1) 100240

      2) 619942

      CAID:

      1) CA228368

      2) CA6401974

      gnomAD:

      1) European (non-Finnish) 0.02225 https://gnomad.broadinstitute.org/variant/12-6031493-C-T?dataset=gnomad_r4

      2) European (non-Finnish) 0.02318 https://gnomad.broadinstitute.org/variant/12-5993928-C-A?dataset=gnomad_r4

    1. An apparently silent nucleotide substitution (c.7056C>T) in the von Willebrand factor gene is responsible for type 1 von Willebrand disease

      PMID: 21393328

      Gene: VWF

      HGNCID: 12726

      Case: proband (III-3 in Fig.1) is 15 year old female

      DiseaseAssertion: type 1 VWD

      FamilyInfo: Mother (II-3 in Fig.1) and grandmother (I-1) are symptomatic (moderate clinical bleeding symptoms). Father and sister asymptomatic.

      ParentalGenotype(s): mother c.7056 C>T

      CasePresentingHPOs: HP:0000421, HP:0000132, HP:0011889, HP:0000225

      CaseHPOFreeRext: mild decrease in VWF:Ag, VWF:CB and VWF:RCo. platelet VWF:Ag content was reduced. Decreased VWF multimer levels

      GenotypingMethod: Sanger sequencing, cDNA analysis

      Gene: VWF

      Variant: c.7056 C>T (affects splicing) aka c.7055_7081del

      ClinVarID: 631688

      gnomAD: AF=0.000007993 gnomAD aggregated (2/250226 alleles) https://gnomad.broadinstitute.org/variant/12-6092341-G-A?dataset=gnomad_r2_1

  3. Sep 2026
    1. A 10-year-old female patient

      Case#: Patient 10, female, Lithuanian, onset at 6yo

      DiseaseAssertion: STGD

      FamilyInfo:Both parents and older brother healthy; no clinical signs in grandparents or extended family; inheritance most likely autosomal recessive

      CasePresentingHPOs: HP:0000505, HP:0012508, HP:0001105, HP:0025148, HP:0000662

      CaseHPOFreeText: progressive central vision loss from age 6; visual acuity dropped from OD=0.3, OS=0.3 to OD=0.08, OS=0.1 over 4 years; fundus examination: yellow pisciform flecks at the maculae; OCT: thin atrophic neurosensory retina in foveal region, altered photoreceptor reflectivity, thinner RPE; ERG: loss of scotopic b-waves, attenuated scotopic a-wave, missing oscillatory potentials, loss of photopic a- and b-waves; “bull’s eye” maculopathy noted

      CaseNotHPOs: n/a

      CaseNotHPOFreeText: n/a

      Genotyping Method: RetChip v1.0 STGD-module array and confirmation by Sanger sequencing

      PreviouslyPublished: n/a

      Variant: ABCA4 NM_000350.2 c.1622T>C p.(L541P), NM_000350.2 c.3113C>T p.(A1038V)

      CAID: CA226911, CA119135

      SupplementalData: clinical images, OCT, ERG, and pedigree information included in supplemental data (Figs. 1–5)

    1. The proposita (II:2), a 62-year-old woman,

      Case#: Patient 62, female, Caucasian, onset at 40yo, Italy

      DiseaseAssertion: STGD

      FamilyInfo: co-segregation of variant in 2 affected siblings, unaffected children heterozygous or wild-type

      CasePresentingHPOs: HP:0007754, HP:0000608, HP:0000548, HP:0000551, HP:0000510, HP:0000559

      CaseHPOFreeText: macular atrophy OU, perifoveal and peripheral fundus flecks OU, RPE changes, thinning of outer nuclear layer OU, BCVA: 20/25 OD/OS, normal intraocular pressure, myopic refraction -3.50 sph -1 cyl, normal rod–cone and cone ERGs

      CaseNotHPOs: n/a

      CaseNotHPOFreeText: n/a

      Genotyping Method: WES with phenotype-driven filtering, variant confirmed by Sanger sequencing, segregation analysis performed, functional minigene splicing assay

      PreviouslyPublished: n/a

      Variant: RDH8 NM_015725.4 c.262+1G>A homozygous

      ClinVar: SUB13728545

      CAID: n/a

      SupplementalData: phenotype and segregation info in supplemental data (Table S1, Figures S1–S5)

    1. Case 3: RP3.03

      Case:RP3,03, male proband with first symptoms as 18 years old. DiseaseAssertion:RP19 FamilyInfo:Proband was born in a consangiuineous family of Moroccan origin. Parents were unaffected. InheritancePattern:AutosomalRecessive CasePresentingHPOs:HP:0007994,HP:0000510,HP:0100014 CaseHPOFreeText:Difficulty with dark adaptation, Fig 4B severe impairment of the entire visual field. Fig 4A Scotopic and photopic ERG traces were altered indicating rod and cone photoreceptor dysfunctions. Macular OCT showed relative preservation of the foveal structure. Epiretinal membrane formation was observed. CaseNOTHPOs:HP:0007667 CaseNOTHPOFreeText:absence of cystic spaces CasePreviousTesting: GenotypingMethod:Whole exome sequencing MultipleGeneVariants: compound heterozygous GeneName:ABCA4 Variant:NM_000350.3(ABCA4):c.5908C>T (p.Leu1970Phe) ClinVarID :7892 gnomAD:0.00362 GeneName:ABCA4 Variant:NM_000350.3(ABCA4):c.6148G>C (p.Val2050Leu) ClinVarID :7884 gnomAD:0.00308

    1. Patient 2 (P2), previously described in a large IRD cohort study [1], is also of Somali origin and was seen in the retina clinic at the University of Iowa at age 11

      Case#: patient, 11, Somali, onset 8yo

      DiseaseAssertion: STGD

      FamilyInfo: parents and four siblings did not report visual issues

      CasePresentingHPOs: HP:0000007, HP:0011504, HP:0000608

      CaseHPOFreeText: BCVA 20/70 OD, 20/80 OS. Bull's eye maculopathy. Outer retinal and RPE atrophy. Slight opacity at level of RPE; loss of outer retinal structures in central area. Normal peripheral retina.

      CaseNotHPOs: n/a

      CaseNotHPOFreeText: n/a

      Genotyping Method: whole genome

      PreviouslyPublished: PMID:28559085

      Variant: NM_000350.3:c.5882G>A p.(Gly1961Glu) ; NM_000350.3:c.634C>T p.(Arg212Cys)

      ClinVar:7888; 7898

      CAID:n/a

      SupplementalData:n/a

    2. Patient 1 (P1) experienced reduced vision from age 5 and was referred to ophthalmology testing at Haukeland University Hospital at age 12.

      Case#: patient, 12, Somali, onset 5yo

      DiseaseAssertion: STGD

      FamilyInfo: parents and 5 siblings did not report visual issues

      CasePresentingHPOs: HP:0000007, HP:0011504, HP:0000608

      CaseHPOFreeText: BCVA 20/135 OD; 20/100 OS. Red-green color deficit. Bull's eye maculopathy, but no pallor of optic disc. Normal peripheral retina. Loss of macular photoreceptor layer; severely reduced cone function.

      CaseNotHPOs: n/a

      CaseNotHPOFreeText: n/a

      Genotyping Method: whole exome sequencing

      PreviouslyPublished: n/a

      Variant: NM_000350.3:c.5882G>A p.(Gly1961Glu) ; NM_000350.3:c.634C>T p.(Arg212Cys)

      ClinVar: 7888; 7898

      CAID: n/a

      SupplementalData: n/a

    1. A 25‐year‐old male presented to our hospital with a chief complaint of blurred vision in the right eye and significant night vision difficulties (nyctalopia) for 5 years.

      Case#:patient, 25, male

      DiseaseAssertion:Retinitis Pigmentosa

      FamilyInfo:Unaffected brother with no variants, parents each heterozygous for one pathogenic variant in ABCA4

      CasePresentingHPOs: HP:0000007, HP:0011462, HP:0007703, HP:0000662, HP:0007641

      CaseHPOFreeText: Onset 20 year old. Gradual onset of blurred vision OD, dyschromatopsia. BCVA 1/20 OD 20/20 OS. Optic disc pale, retinal arteries and foveal reflex attenuated. Yellow deposits in perofoveal area and mid-peripheral retina, which showed mottled appearance OU. OCT - thinning of outer nuclear layer and disruption of ellipsoid zone with hyper-reflective flecks. Severe bilateral constriction in visual field. Hypofluorescence of optic disc OU

      CaseNotHPOs: n/a

      CaseNotHPOFreeText: n/a

      Genotyping Method: whole exome (Sanger segregation test)

      PreviouslyPublished: n/a

      Variant: NM_000350.3:c.4793C>A; NM_000350.3:c.1769A>G

      ClinVar: 99321

      CAID: CA341279788

      SupplementalData: n/a

    1. Patient 4, a 33-year-old Caucasian woman, presented in July 1998 with a gradual decline in visual acuity over the last 9 years and a best-corrected visual acuity of 20/300 in both eyes.

      Case#: Patient 4, Female, Caucasian, 33yo

      DiseaseAssertion: STGD1

      FamilyInfo: One of eight siblings; four affected. Disease segregates with ABCA4 variants consistent with autosomal recessive inheritance. Parents are deceased and can't be tested.

      CasePresentingHPOs: HP:0007663, HP:0007754, HP:0025147, HP:0007924, HP:0011507

      CaseHPOFreeText: gradual decline in visual acuity over 9 years, BCVA 20/300 OU, bilateral beaten-bronze appearance of the macula, numerous perimacular yellow flecks, fluorescein angiography showing hyperfluorescence in the posterior pole and dark choroid in the periphery

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: absence of central hypofluorescence on fluorescein angiography (present in affected siblings but not this patient)

      Genotyping Method: SSCP analysis; Taq Dyedeoxy Terminator Cycle Sequencing kit

      PreviouslyPublished: N/A

      Variant: NM_000350.3(ABCA4):c.2588G>C (p.Gly863Ala), NM_000350.3(ABCA4):c.161G>A (p.Cys54Tyr)

      ClinVar: ClinVarID:7879, ClinVarID:99065

      CAID: N/A

      SupplementalData: Segregation and sequencing data (Figures 1, 4)

    1. ABCA4-retinopathy

      Case#: 1 male, 24 years old, from consanguineous parents, Somali ancestry.

      DiseaseAssertion: ABCA4-related retinopathy Stargardt disease

      FamilyInfo: Single affected individual consanguineous parents, Somali ancestry. No additional information about family is provided in text.

      CasePresentingHPOs: HP:0000572- reduced central vision, HP:0001102- Angioid streaks, HP:0007980- retinal pigment epithelium atrophy, HP:0007401- Macular atrophy, HP:0000630- Abnormal retinal arterial/arteriolar morphology

      CaseHPOFreeText: Presents with reduced central vision, Fundus autofluorescence (FAF) showed angioid streaks, reduced signal in the central macula indicative of retinal pigment epithelium atrophy. Electrophysiological testing showed severe macular dysfunction with generalized retinal involvement.

      CaseNotHPOs: HP:0200070- Peripheral retinal atrophy

      CaseNotHPOFreeText: Peripheral retina appears unaffected after ultra-widefield FAF imaging

      Genotyping Method: PCR-amplification and Sanger sequencing of ABCA4 on Exon 42, Stargardt/Macular dystrophy SmartPanel v5; Molecular Vision Laboratory, Hillsboro, Oregon tested DNA for mutations which confirmed findings of ABCA4, with no additional pathogenic mutations found.

      PreviouslyPublished: PMID: 22261738, 1 male, 24 years old, from consanguineous parents, Somali ancestry presenting with reduced vision.

      Variant: NM_000350.3(ABCA4):c.5882G>A (p.Gly1961Glu)

      ClinVar: Variation ID: 7888

      CAID: N/A

      SupplementalData: N/A

    1. Case report: Disease phenotype associated with simultaneous biallelic mutations in ABCA4 and USH2A due to uniparental disomy of chromosome 1

      Case#: Patient 9, female, Mexican, symptoms onset 6 yrs. ago, Mexico City

      DiseaseAssertion: IRD

      FamilyInfo: parents are non-sanguineous and asymptomatic, they also denied any history related to ocular diseases. Information disclosed that the mother had one stillbirth and three miscarriages, but denied any related diseases/health issues to this child.

      CasePresentingHPOs: HP:00305, HP:00080, HP:0000493, HP:0025586, HP:0030329, HP:0012713

      CaseHPOFreeText: Proband presented with light sensitivity as well as adaptation difficulties when going from dark-to-light. Right eye was 20/200 and left eye was 20/160 from the visual acuity test. Macular bull's eye appearance. Subnormal rod and cone responses. Peripapillary sparing retina.

      CaseNotHPOs: HP:0007737, HP:0000750, HP:0000510

      CaseNotHPOFreeText: No afferent pupillary defect. No anomalies in anterior segment.

      Genotyping Method: QIAamp DNA Blood Kit was used to extract gDNA and quantification/purity of the sample was found using a NanoDrop 2000 spectrophotometer. 293 genes were sequenced. gDNA was sequenced via Illumina technology. Following, certain sequences were additionally analyzed against a reference genome in order to identify changes and interpret.

      PreviouslyPublished: n/a

      Variant: NM_000350.3(ABCA4):c.4926C>G (p.Ser1642Arg), NM_000350.3(ABCA4):c.5044_5058del (p.Val1682_Val1686del)

      ClinVar: 99332, 99340

      CAID: n/a

      SupplementalData: Phenotype data in results section as well as figures 1, 2, and 3 showing phenotypic testing results.

    1. A 37-year-old man presented with a 3-year history of decreased vision in the right eye, which had recently become worse.

      Case#: single case, 37-year-old male, ethnicity not specified although family originally from the Middle East, examined in the UK

      DiseaseAssertion: STGD

      FamilyInfo: No history of consanguinity. No history of inherited retinal disease, poor vision or colour vision disturbance. Father had recent diagnosis of chronic central serous retinopathy, not consistent with STGD

      CasePresentingHPOs: n/a

      CaseHPOFreeText: Late-onset Stargardt disease with slowly progressive phenotype. The patient present with a 3-year history of decreased vision in the right eye that had recently significantly worsened. Visual acuity was 6.24 in right eye and 6/6 in left eye. Fundus examination reveled scattered atrophy and pisiform fundal flecks in both eye, right worse than left. Fluorescein angiography showed a silent choroid and partial bull's eye maculopathy, right worse than left. OCT showed loss of photoreceptors in both eyes and partial central sparing in the left eye. Photopic and scotopic ERG showed reduced amplitude of responses in the right eye and lower range amplitudes in the left eye, normal implicit times in both eyes. Pattern ERG and multifocal ERD showed central retinal dysfunction with preserved peripheral function. No change in vision or retinal appearance over the next 14 months of follow up.

      CaseNotHPOs: n/a

      CaseNotHPOFreeText: No night vision symptoms. No history of retinotoxic drug exposure.

      Genotyping Method: Next-generation sequence analysis with the Oxford Genetics Testing Laboratory Macular Gene Panel.

      PreviouslyPublished: Thr829Met missense mutation had been previously reported in an individual with autosomal recessive retinitis pigmentosa, but not previously associated with STGD phenotype.

      Variant: ABCA4 NM_000350 c.5882G>A, p.(Gly1961Glu) c.2486C>T, p.(Thr829Met)

      ClinVar: n/a

      CAID: CA958261, CA119132

      SupplementalData: n/a

    1. 48-year-old woman

      Case#: Patient female, 48y, ethnicity not reported

      DiseaseAssertion: Stargardt disease (STGD1) with unusual phenotype resembling pattern dystrophy

      FamilyInfo: autosomal recessive inheritance; segregation analysis confirms each parent carries one variant (heterozygous). Pedigree shown in Figure 3. Proband is compound heterozygous for ABCA4 variants.

      CasePresentingHPOs: HP:0007663, HP:0007754, HP:0030636, HP:0000548

      CaseHPOFreeText: mild visual impairment (BCVA 20/25 and 20/20), perifoveal yellow fleck-like lesions, hyperautofluorescent lesions with lipofuscin accumulation, foveal sparing, subretinal material accumulation, phenotype resembling pattern dystrophy, bilateral macular involvement, decreased p50 values on pattern ERG

      CaseNotHPOs: HP:0000510 (normal ERG responses except pattern ERG component)

      CaseNotHPOFreeText: normal full-field ERG (scotopic and photopic responses), normal electrooculography, preserved outer retina structure, minimal photoreceptor disruption at fovea

      Genotyping Method: targeted next-generation sequencing (Illumina NextSeq500) with SeqCap EZ enrichment panel; Sanger sequencing used for confirmation and segregation analysis

      PreviouslyPublished: n/a

      Variant: ABCA4 NM_000350.2: c.428C>T (p.Pro143Leu); c.3113C>T (p.Ala1038Val)

      ClinVar: 99273; 7894

      CAID: n/a

      SupplementalData: clinical imaging and genetic/segregation data in supplemental data (Figures 1–3, Table 1)

    1. ABCA4

      Case#: 1 male, 6 years old, from Taiwanese and Korean decent.

      DiseaseAssertion: ABCA4-related retinopathy Stargardt disease

      FamilyInfo: Single affected individual. Paternal uncle presented with Stargart disease previously, and Taiwanese and Korean descent underwent genetic testing to identify two pathogenic variants in the ABCA4 gene. One of the variants found was the same ABCA4 variant from the originally affected individual. No additional family information is provided in text.

      CasePresentingHPOs: HP:0000529 - progressive visual loss, HP:0025010 - Foveal atrophy, HP:0000603 - Central scotoma, HP:0007663 - Decreased visual acuity, HP:0030602 - Abnormal fundus autofluorescence imaging, HP:0007984 - ERG: Reduced dark-adapted b-wave amplitude, HP:0000512 - Abnormal electroretinogram, HP:0020032 - Hyperreflective retinal dots on OCT

      CaseHPOFreeText: peripapillary sparing was observed on fundus autofluorescence imaging.

      CaseNotHPOs: HP:0012045 - Retinal flecks

      CaseNotHPOFreeText: N/A

      Genotyping Method: Genetic testing was used and after sequencing two variants were found on the ABCA4 gene.

      PreviouslyPublished: N/A

      Variant: NM_000350.3(ABCA4):c.3523-2A>G

      Variant: NM_000350.3(ABCA4):c.2249T>C (p.Leu750Pro)

      ClinVar: Variation ID: 866764

      ClinVar: Variation ID: 417984

      CAID: N/A

      SupplementalData: N/A

    1. 10-year-old girl

      Case#: Patient female, 10y, ethnicity not reported

      DiseaseAssertion: Stargardt disease (STGD1), early onset

      FamilyInfo: autosomal recessive inheritance; co-segregation of variants in parents (each heterozygous). Pedigree shown in Figure 1A. One unaffected sibling reported.

      CasePresentingHPOs: HP:0007663, HP:0007754, HP:0002587, HP:0030636, HP:0000548

      CaseHPOFreeText: early-onset visual decline (age 7), symmetric disease in both eyes, hyperautofluorescent ring surrounding macular atrophy, lipofuscin accumulation, photoreceptor degeneration.

      CaseNotHPOs: HP:0007707

      CaseNotHPOFreeText: normal anterior segment on slit lamp exam; no external ocular abnormalities reported.

      Genotyping Method: Sanger sequencing confirmation; variant identification likely via next-generation sequencing (not explicitly stated).

      PreviouslyPublished: n/a

      Variant: ABCA4 NM_000350.2: c.6817-713A>G; c.3259G>A (p.Glu1087Lys)

      ClinVar: n/a

      CAID: CA2837995439, CA227097

      SupplementalData: phenotype and validation data in Figures 1–5 and Supplemental Figures S1–S5

    1. ABCA4 gene mutation

      Case#: 1 female, 12 years old.

      DiseaseAssertion: bilateral stage 2B Coats disease. ABCA4 gene mutations were found upon genetic analysis but Stargardt disease was not diagnosed.

      FamilyInfo: Single affected individual. Past medical history and family history was reported as normal. No additional information about family is provided in text.

      CasePresentingHPOs: HP:0007663 - Reduced visual acuity, HP:0001147 - Retinal exudate, HP:0007763 - Retinal telangiectasia, HP:0025355 - Retinal arteriolar macroaneurysms, HP:0011505- Cystoid macular edema, HP:0020032 - Hyperreflective retinal dots on OCT, HP:0001045 - Vitiligo

      CaseHPOFreeText: bilateral significant capillary nonperfusion noted mostly in the temporal retinal periphery together with light-bulb-like capillary dilations and staining of telangiectatic vessels. Mild intravitreal hemorrhage

      CaseNotHPOs: HP:0012045 - Retinal flecks, HP:0025010 - Foveal atrophy, HP:0000603 - Central scotoma, HP:0000556 - Retinal dystrophy, HP:0000512 - Abnormal electroretinogram

      CaseNotHPOFreeText: Relatively normal foveal architecture.

      Genotyping Method: Genetic analysis was performed using Sanger sequencing for the NDP gene, which revealed no pathogenic variants. Exome sequencing was then used with the Illumina HiSeq 2500 platform, which identified two compound heterozygous variants in the ABCA4 gene. Lastly, no mutations were found in the TINF2 gene.

      PreviouslyPublished: N/A

      Variant: NM_000350.3(ABCA4):c.1373C>T (p.Arg458Cys), NM_000350.3(ABCA4):c.5882G>A (p.Gly1961Glu)

      ClinVar: Variation ID: 7888 ( for p.Arg458Cys variant however I believe this is mislabeled for this variant NM_000350.3(ABCA4):c.5882G>A (p.Gly1961Glu), no variantion ID found for NM_000350.3(ABCA4):c.1373C>T (p.Arg458Cys)

      CAID: N/A

      SupplementalData: N/A

    1. The variant was c.52C>T (p.Arg18Trp).

      PMID:39398711

      Gene: ABCA4

      HGNC ID: 34

      Case Annotation Template

      Case#: 19-year-old male

      DiseaseAssertion: Stargardt disease 1 (STGD1)

      FamilyInfo: No family history of eye disease reported. Autosomal recessive inheritance consistent with STGD1. Homozygous ABCA4 variant identified.

      CasePresentingHPOs: DecreasedCentralVA, MacularAtrophy, MacularFlecks, PeripapillarySparing, OpticNervePallor

      CaseHPOFreeText: Five-year history of progressive bilateral central vision loss, worse at near. Alternating exotropia measuring 16 prism diopters in all gazes OU. Best corrected visual acuity 20/200 OU. Fundus examination revealed pigment deposition and macular mottling. Fundus autofluorescence showed central decreased autofluorescence surrounded by increased autofluorescence. Fluorescein angiography demonstrated dark choroid. OCT showed loss of the central ellipsoid zone with hyperreflective deposits. Multifocal ERG demonstrated significant functional loss.

      CaseNotHPOs: NightBlindness

      CaseNotHPOFreeText: Patient denied nyctalopia, photophobia, or flashes. Color vision normal on Ishihara testing.

      Genotyping Method: Genotyping Method: Next-generation sequencing (NGS) with deletion/duplication analysis (Invitae Corporation).

      PreviouslyPublished: N/A

      Variant: ABCA4 c.52C>T (p.Arg18Trp)

      ClinVar: ClinVarID:7899

      CAID: N/A

      SupplementalData: N/A

  4. Jul 2026
    1. 7

      Case#:Patient 7, male, 5 years old

      DiseaseAssertion:Neonatal/Infantile Epileptic Encephalopathy (NIEE)

      FamilyInfo:The family is French/Chinese

      ParentalGenotype:The variant was inherited from Patient 7's asymptomatic mother.

      CasePresentingHPOs:HP:0010864, HP:0012758, HP:0000729, HP:0007359, HP:0002069, HP:0032794, HP:0001250, HP:0000252.

      CaseHPOFreeText:Patient 7 presents with severe intellectual disability, developmental slowdown, and various seizure types. Patient 7 has Autistic Spectrum Disorder (ASD) and microcephaly.

      Patient History

      @ 12 months - Patient 7 presented with seizures.

      Patient 7 developed additional seizure types including: focal seizures with/without generalization, generalized tonic/clonic/tonic-clonic seizures, myoclonic seizures, and hypomotor seizures.

      Patient 7 was on two antiepileptic drugs at most recent followup visit which reduced seizure frequency by >50%.

      CaseNotHPOs:Not provided

      CaseNotHPOFreeText:Not provided

      CasePreviousTesting:The authors selected a cohort of 31 patients with seizure cryptogenic Neonatal/Infantile Epileptic Encephalopathy (NIEE) and seizure onset before 24 months.

      Exclusion criteria included: (1) Patients with a definite history of brain insult, malformation of cortical development, neurocutaneous and syndromal disorders, and confirmed or highly suspected neurometabolic disorders based on clinical and biochemical markers. (2) Patients with Dravet syndrome and epilepsy at infancy with migrating focal seizure were also excluded because the majority of variants are detected in the SCN1A (>85%) and KCNT1 (approximately 50%) genes.

      Formal neuropsychological testing or best clinical assessment was used to classify patient development or intelligence.

      PreviouslyPublished:Not previously published

      GenotypingMethod:Whole Exome Sequencing (WES) variant results were filtered in a panel of 430 epilepsy-associated genes. After selection of variants from the 430-gene panel, the synonymous variants, variants with variant frequency <10%, and variants with allele frequency >1% were removed.

      Gene:SLC9A6

      Variant:Hemizygous splice site NM_001042537.1 c. 794-2A>G was assessed by the authors to be likely pathogenic.

      HGVS:Not provided

      ClinVarID:Not found

      CAID:CA414750320

      gnomAD:Not found

      MultipleGeneVariants:Not provided

  5. Jan 2023
    1. Patient 1

      Case#: 36 y.o male European

      DiseaseAssertion: Limb Girdle

      FamilyInfo: None

      CasePresentingHPOs: HP:0003701,HP:0003560, HP:0006785, HP:0003236,HP:0003325, HP:0008981,

      CaseHPOFreeText: Experienced two episodes of atrial fibrillation. High CADD scores. Exercise-induced myalgia and/or rhabdomyolysis

      CaseNotHPOs:

      CaseNotHPOFreeText:

      MotorAchievement: Age 20 he developed exercise intolerance and sporadic myoglobinuria after intense exercise. Able to walk and cycle for long distances with little muscle pain.

      CreatineKinase: Ranging from 1700 to 8000 UI/L), at the age of 10 years

      CasePreviousTesting: Last neurological examination there was moderate calf hypertrophy.

      GenotypingMethod: Muscle Biopsy using next generation sequencing and multiple gene panel. Minimal myopathic changes on histological assessment and normal immunofluorescence staining for muscle proteins including α-sarcoglycan

      PreviouslyPublished:

      Variant: NM_000023.4(SGCA):c.850C>T (p.Arg284Cys)

      ClinVar: 9439

      CAID:

      gnomAD: 0.0007716