5,406 Matching Annotations
  1. Oct 2026
    1. A319V

      Case#: Family 26, Pakistan

      DiseaseAssertion: MPS1-S

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: The Scheie phenotype is characterized by aortic valve disease, corneal clouding, limited skeletal problems, but no mental retardation. This is a general assessment and not specific to this patient.

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: The α-L-iduronidase enzyme activities in leucocytes from all patients in the study was measured using the artificial substrate 4-methylumbelliferyl α-L iduronide (Sigma). Values ranged from 0 to 2.47 nmol/h/mg protein (reference range: 28–92 nmol/h/mg protein) and did not correlate to the clinical phenotype.

      α-L-iduronidase activity in COS-7 cells transiently transfected with wild-type or mutagenised cDNAs. α-L-iduronidase activity: 5.2 nmol/h/mg cell protein; values are the means of two experiments.

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.956C>T (p.A319V)

      Variant1ClinVarID: 1683230

      Variant1CAID: CA2802126

      Variant2: c.956C>T (p.A319V)

      Variant2ClinVarID: 1683230

      Variant2CAID: CA2802126

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    2. 740delC

      Case#: Family 18, Slovenia

      DiseaseAssertion: MPS1-H

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: The paper states that "Hurler form is characterized by skeletal abnormalities, hepatosplenomegaly and severe mental retardation" but is not specific to this patient.

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: The α-L-iduronidase enzyme activities in leucocytes from all patients in the study was measured using the artificial substrate 4-methylumbelliferyl α-L iduronide (Sigma). Values ranged from 0 to 2.47 nmol/h/mg protein (reference range: 28–92 nmol/h/mg protein) and did not correlate to the clinical phenotype.

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.652delC; c.740delC in the paper (old nomenclature)

      Variant1ClinVarID: N/A

      Variant1CAID: CA2586965939

      Variant2: c.652delC; c.740delC in the paper (old nomenclature)

      Variant2ClinVarID: N/A

      Variant2CAID: CA2586965939

      AdditionalVariants: N/A

      ParentalGenotype: Parental testing conducted, each parent was shown to carry one of the sequence changes found in their affected child.

      PreviouslyPublished N/A

    3. W402X

      Case#: Family 6, UK

      DiseaseAssertion: MPS1-H

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: The paper states that "Hurler form is characterized by skeletal abnormalities, hepatosplenomegaly and severe mental retardation" but is not specific to this patient.

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: The α-L-iduronidase enzyme activities in leucocytes from all patients in the study was measured using the artificial substrate 4-methylumbelliferyl α-L iduronide (Sigma). Values ranged from 0 to 2.47 nmol/h/mg protein (reference range: 28–92 nmol/h/mg protein) and did not correlate to the clinical phenotype.

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.1205G>A (p.W402X)

      Variant1ClinVarID: 11908

      Variant1CAID: CA220498

      Variant2: c.46_57del (p.Ser16_Ala19del); in the paper it is listed as c.134del12 (old nomenclature)

      Variant2ClinVarID: 92643

      Variant2CAID: CA220509

      AdditionalVariants: N/A

      ParentalGenotype: Parental testing conducted, each parent was shown to carry one of the sequence changes found in their affected child.

      PreviouslyPublished N/A

    4. R619X

      Case#: Family 8, UK

      DiseaseAssertion: MPS1-H

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: The paper states that "Hurler form is characterized by skeletal abnormalities, hepatosplenomegaly and severe mental retardation" but is not specific to this patient.

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: The α-L-iduronidase enzyme activities in leucocytes from all patients in the study was measured using the artificial substrate 4-methylumbelliferyl α-L iduronide (Sigma). Values ranged from 0 to 2.47 nmol/h/mg protein (reference range: 28–92 nmol/h/mg protein) and did not correlate to the clinical phenotype.

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.1205G>A (p.W402X)

      Variant1ClinVarID: 11908

      Variant1CAID: CA220498

      Variant2: c.1855C>T (p.R619X)

      Variant2ClinVarID: 280976

      Variant2CAID: CA2802455

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. Case#: Patient 1, male, 6.9 months (age at HSCT), 4.2 months (age at ERT)

      DiseaseAssertion: MPS1-H

      FamilyInfo: N/A

      CasePresentingHPOs: Autoimmune hemolysis (HP:0001890)

      CaseHPOFreeText: Rhinovirus pneumonitis

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: 0.22 (at diagnosis), 55.5 (post HSCT) Units not provided.

      CaseUrineGAGs: N/A

      CaseERT: Yes - 83 days duration

      CaseBMT: Yes - MUD (matched unrelated donor) with stem cells sourcing from the CB (cord blood)

      Variant1: c.1205G>A (p.W402X)

      Variant1ClinVarID: 11908

      Variant1CAID: CA220498

      Variant2: c.1205G>A (p.W402X)

      Variant2ClinVarID: 11908

      Variant2CAID: CA220498

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. patient

      Case#: Patient with Hurler Syndrome. No clinical information provided.

      DiseaseAssertion: MPS-IH

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.1205G>A (p.W402X)

      Variant1ClinVarID: 11908

      Variant1CAID: CA220498

      Variant2: c.1205G>A (p.W402X)

      Variant2ClinVarID: 11908

      Variant2CAID: CA220498

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. patient

      Case#: Female, 6 months old (age of onset), 1 year old (age at report), Mauritanian descent, weight of 7.94 kg (5%), length of 75 cm (just below 50%), occipitofrontal circumference was 47 cm (95%).

      DiseaseAssertion: MPS1-H

      FamilyInfo: Born from healthy first cousins

      CasePresentingHPOs: Eczema, mild coarse facial features, frontal bossing, depressed nasal bridge, flared nostrils, retrognathia, truncal hypotonia, Mongolian blue spot, dilated cardiomyopathy, hip dislocation (HP:0000964, HP:0000256, HP:0002007, HP:0005280, HP:0000454, HP:0000278, HP:0008936, HP:0011369, HP:0001644, HP:0002827)

      CaseHPOFreeText: N/A

      CaseNotHPOs: Hepatosplenomegaly (HP:0001433)

      CaseNotHPOFreeText: Hands and feet were normal. A neuro-exam revealed intact cranial nerves and normal power and deep tendon reflexes were normal. Cranial computed tomography (CT)-scan and abdominal ultrasound were normal.

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.1598C>G (p.P533R)

      Variant1ClinVarID: 11910

      Variant1CAID: CA256112

      Variant2: c.1598C>G (p.P533R)

      Variant2ClinVarID: 11910

      Variant2CAID: CA256112

      AdditionalVariants: N/A

      ParentalGenotype: Both mother and father received WES and are confirmed heterozygous carriers of c.1598C>G (p.P533R)

      PreviouslyPublished N/A

    1. distinct mutant IDUA alleles

      Case#: Patient 98, Turkey, patient belong to the same geographical region as patients 86, 90, and 92

      DiseaseAssertion: MPS1-H

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.494-1G>A

      Variant1ClinVarID: 557942

      Variant1CAID: CA355961634

      Variant2: c.494-1G>A

      Variant2ClinVarID: 557942

      Variant2CAID: CA355961634

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    2. missense mutations

      Case#: Patient 2, Italy

      DiseaseAssertion: MPS1-H

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.979G>C (p.A327P)

      Variant1ClinVarID: 167190

      Variant1CAID: CA234128

      Variant2: c.979G>C (p.A327P)

      Variant2ClinVarID: 167190

      Variant2CAID: CA234128

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. Scheie

      Case#: 0.7% residual activity at 37 °C

      DiseaseAssertion: MPS1-S

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: 1.9 ± 0.7 nmol/mg/h IDUA activity at 37 °C

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.1148G>A (p.R383H)

      Variant1ClinVarID: 558189

      Variant1CAID: CA2802205

      Variant2: c.1148G>A (p.R383H)

      ClinVarID: 558189

      Variant2CAID: CA2802205

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. Abnormal

      Case#: No additional case information provided

      DiseaseAssertion: Not specified

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: Abnormal

      CaseUrineGAGs: Normal

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.1051G>A (p.A351T)

      Variant1ClinVarID: 967585

      Variant1CAID: CA2802176

      Variant2: c.497G>C (p.R166T)

      Variant2ClinVarID: 1388155

      Variant2CAID: CA2801967

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    2. NP

      Case#: No additional case information provided

      DiseaseAssertion: Not specified

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: Not performed

      CaseUrineGAGs: Normal

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.53T>C (p.L18P)

      Variant1ClinVarID: 193062

      Variant1CAID: CA238566

      Variant2: c.1651G>C (p.V551L)

      Variant2ClinVarID: 1410776

      Variant2CAID: CA2802341

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. Case#: Variant not associated with a proband. Variant listed in supplementary materials in Supplementary Table 4

      DiseaseAssertion: Mucopolysaccharidosis type I, MPS I

      FamilyInfo: N/A

      CasePresentingHPOs:

      CaseHPOFreeText:

      CaseNotHPOs:

      CaseNotHPOFreeText:

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: V279A

      Variant1ClinVarID:

      Variant1CAID: CA355962380

      Variant2: N/A

      Variant2ClinVarID: N/A

      Variant2CAID: N/A

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished: N/A

    2. Case#: Variant not associated with a proband. Variant listed in supplementary materials in Supplementary Table 4

      DiseaseAssertion: Mucopolysaccharidosis type I, MPS I

      FamilyInfo: N/A

      CasePresentingHPOs:

      CaseHPOFreeText:

      CaseNotHPOs:

      CaseNotHPOFreeText:

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: T103P

      Variant1ClinVarID:

      Variant1CAID: CA355960996

      Variant2: N/A

      Variant2ClinVarID: N/A

      Variant2CAID: N/A

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished: N/A

    3. Case#: Variant not associated with a proband. Variant listed in supplementary materials in Supplementary Table 4

      DiseaseAssertion: Mucopolysaccharidosis type I, MPS I

      FamilyInfo: N/A

      CasePresentingHPOs:

      CaseHPOFreeText:

      CaseNotHPOs:

      CaseNotHPOFreeText:

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: G409R

      Variant1ClinVarID: 1084956

      Variant1CAID: CA91169920

      Variant2: N/A

      Variant2ClinVarID: N/A

      Variant2CAID: N/A

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished: N/A

    4. Case#: Variant not associated with a proband. Variant listed in supplementary materials in Supplementary Table 4

      DiseaseAssertion: Mucopolysaccharidosis type I, MPS I

      FamilyInfo: N/A

      CasePresentingHPOs:

      CaseHPOFreeText:

      CaseNotHPOs:

      CaseNotHPOFreeText:

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: S633L

      Variant1ClinVarID: 556406

      Variant1CAID: CA355966010

      Variant2: N/A

      Variant2ClinVarID: N/A

      Variant2CAID: N/A

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished: N/A

    1. 5

      Case#: Patient 5, born in 1991 (paper published in 2017), 10 months (age at first treatment)

      DiseaseAssertion: MPSI-H

      FamilyInfo: N/A

      CasePresentingHPOs: Corneal clouding, retinopathy (HP:0007957, HP:0000488)

      CaseHPOFreeText: N/A

      CaseNotHPOs: Cataract (HP:0000518)

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: 21.6 ng/mol (40.9 weight matched enzyme reference assay)

      CaseUrineGAGs: 0.79 DS/CS

      CaseERT: No

      CaseBMT: Yes, Sib

      Variant1: c.1205G>A (p.W402X)

      Variant1ClinVarID: 11908

      Variant1CAID: CA220498

      Variant2: c.1205G>A (p.W402X)

      Variant2ClinVarID: 11908

      Variant2CAID: CA220498

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    2. 8

      Case#: Patient 8, born in 1994 (paper published in 2017), 9 months (age at first treatment), 2 years 3 months (age at last treatment)

      DiseaseAssertion: MPSI-H

      FamilyInfo: N/A

      CasePresentingHPOs: Corneal clouding, retinopathy, cataract (HP:0007957, HP:0000488, HP:0000518)

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: 7.14 ng/mol (56.53 weight matched enzyme reference assay)

      CaseUrineGAGs: 1.24 DS/CS

      CaseERT: No

      CaseBMT: Yes, Sib

      Variant1: c.1205G>A (p.W402X)

      Variant1ClinVarID: 11908

      Variant1CAID: CA220498

      Variant2: c.1205G>A (p.W402X)

      Variant2ClinVarID: 11908

      Variant2CAID: CA220498

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    3. 9

      Case#: Patient 9, born in 2008 (paper published in 2017), 8 months (age at first treatment)

      DiseaseAssertion: MPSI-H

      FamilyInfo: N/A

      CasePresentingHPOs: Corneal clouding (HP:0007957)

      CaseHPOFreeText: N/A

      CaseNotHPOs: Retinopathy, cataract (HP:0000488, HP:0000518)

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: 47 ng/mol (32 weight matched enzyme reference assay)

      CaseUrineGAGs: 0.34 DS/CS

      CaseERT: Yes

      CaseBMT: Yes, Cord

      Variant1: c.1205G>A (p.W402X)

      Variant1ClinVarID: 11908

      Variant1CAID: CA220498

      Variant2: c.208C>T (p.Q70X)

      Variant2ClinVarID: 11909

      Variant2CAID: CA204563

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    4. 3

      Case#: Patient 3, born in 2005 (paper published in 2017), 2 years and 7 months (age at first treatment)

      DiseaseAssertion: MPSI-H

      FamilyInfo: N/A

      CasePresentingHPOs: Corneal clouding (HP:0007957)

      CaseHPOFreeText: N/A

      CaseNotHPOs: Retinopathy, cataract (HP:0000488, HP:0000518)

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: 86 ng/mol (60 weight matched enzyme reference assay)

      CaseUrineGAGs: 0.43 DS/CS

      CaseERT: Yes

      CaseBMT: Yes, Sib

      Variant1: c.17_24CCCGCGCC (Found to be c.17_24dup) (p.Ala9ProfsTer?)

      Variant1ClinVarID: N/A

      Variant1CAID: CA645372294

      Variant2: c.1871A>T (p.Asp624Val)

      Variant2ClinVarID: N/A

      Variant2CAID: CA355965955

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    5. 11

      Case#: Patient 11, born in 2003 (paper published in 2017), 1 year (age at first treatment)

      DiseaseAssertion: MPSI-H

      FamilyInfo: N/A

      CasePresentingHPOs: Corneal clouding (HP:0007957)

      CaseHPOFreeText: N/A

      CaseNotHPOs: Retinopathy, cataract (HP:0000488, HP:0000518)

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: 71.98 ng/mol (10.86 weight matched enzyme reference assay)

      CaseUrineGAGs: 0.38 DS/CS

      CaseERT: Yes

      CaseBMT: Yes, Cord

      Variant1: c.1205G>A (p.W402X)

      Variant1ClinVarID: 11908

      Variant1CAID: CA220498

      Variant2: c.208C>T (p.Q70X)

      Variant2ClinVarID: 11909

      Variant2CAID: CA204563

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. 5/m

      Case#: Patient 5, male, 17.5 months (age at diagnosis), 21.5 months (age at HSCT), 5 MRI + neuropsychological observations over the course of 10 years.

      DiseaseAssertion: MPS-1H

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: 37.2 nmol/h/mg (Normal values: 11-43 nmol/h/mg)

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: Yes

      Variant1: c.1166_1171dup (p.A389_M390dup)

      Variant1ClinVarID: N/A

      Variant1CAID: CA2586965963

      Variant2: c.1166_1171dup (p.A389_M390dup)

      Variant2ClinVarID: N/A

      Variant2CAID: CA2586965963

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. Case#: Pt 7, age is 13 months (proband can be found in Table 1)

      DiseaseAssertion: Hurler syndrome, mucopolysaccharidosis type IH, MPS IH, MPS type I

      FamilyInfo: No family information provided

      CasePresentingHPOs:

      CaseHPOFreeText:

      CaseNotHPOs:

      CaseNotHPOFreeText:

      CaseEnzymeAssay: In methods it is stated that an IDUA activity assay was conducted on cartilaginous pellets generated from patient-derived bone marrow stromal cells at 5 weeks. However, results of the IDUA activity assays are not stated.

      CaseUrineGAGs: "Significantly higher levels of GAGs in MPS IH compared with HD pellets at.1 week of chondrogenic differentiation, thus indicating that GAG accumulation in MPS IH can be seen during cell condensation and early differentiation stages." Total GAG content for each sample in ug GAG/ug DNA shown in Figure 4 graphs.

      CaseERT: Don't know

      CaseBMT: Don't know

      Variant1: p.Q70X

      Variant1ClinVarID:

      Variant1CAID: PA3044620172

      Variant2: c.398_403del6

      Variant2ClinVarID: 863830

      Variant2CAID: CA2801912

      AdditionalVariants: No additional variants mentioned

      ParentalGenotype: No parental information provided

      PreviouslyPublished: No mention of being previously published

    2. Case#: Pt 4, age is 12 months (proband can be found in Table 1)

      DiseaseAssertion: Hurler syndrome, mucopolysaccharidosis type IH, MPS IH, MPS type I

      FamilyInfo: No family information provided

      CasePresentingHPOs:

      CaseHPOFreeText:

      CaseNotHPOs:

      CaseNotHPOFreeText:

      CaseEnzymeAssay: In methods it is stated that an IDUA activity assay was conducted on cartilaginous pellets generated from patient-derived bone marrow stromal cells at 5 weeks. However, results of the IDUA activity assays are not stated.

      CaseUrineGAGs: "Significantly higher levels of GAGs in MPS IH compared with HD pellets at.1 week of chondrogenic differentiation, thus indicating that GAG accumulation in MPS IH can be seen during cell condensation and early differentiation stages." Total GAG content for each sample in ug GAG/ug DNA shown in Figure 4 graphs.

      CaseERT: Don't know

      CaseBMT: Don't know

      Variant1: p.P496R

      Variant1ClinVarID: 496861

      Variant1CAID: CA2802275

      Variant2: p.P496R

      Variant2ClinVarID: 496861

      Variant2CAID: CA2802275

      AdditionalVariants: No additional variants mentioned

      ParentalGenotype: No parental information provided

      PreviouslyPublished: No mention of previously being published

    1. 12/F

      Case#: Patient 12, female, Han origin, 13 years old (age at diagnosis)

      DiseaseAssertion: MPS1-S

      FamilyInfo: N/A

      CasePresentingHPOs: Joint stiffness, Hepatosplenomegaly (HP:0001387, HP:0001433)

      CaseHPOFreeText: Cardiac disease

      CaseNotHPOs: Global Developmental Delay, Macrocephaly, Mongolian macula, Hernia, Airway obstruction (HP:0001263, HP:0000256, HP:0011369, HP:0100790, HP:0006536)

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: IDUA activity 0.0 nmol/h/mg protein. The normal range in Chinese controls was found to be 27.2–52 nmol/h/mg protein.

      CaseUrineGAGs: Diagnosis was confirmed biochemically by the demonstration of an increased excretion of urinary dermatan sulfate and heparan sulfate.

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.536C>G (p.S633L)

      Variant1ClinVarID: 556406

      Variant1CAID: CA355966010

      Variant2: c.536C>G (p.S633L)

      Variant2ClinVarID: 556406

      Variant2CAID: CA355966010

      AdditionalVariants: N/A

      ParentalGenotype: Father - c.536C>G, Mother - c.536C>G. The transmission of sequence variations found in each patient was inferred by sequencing the corresponding exons of the patient's parents - confirmed by parental testing.

      PreviouslyPublished N/A

    2. 7/F

      Case#: Patient 7, female, Han origin, 7 years old (age at diagnosis)

      DiseaseAssertion: MPS1-H/S

      FamilyInfo: N/A

      CasePresentingHPOs: Global Developmental Delay, Macrocephaly, Joint stiffness, Hepatosplenomegaly (HP:0001263, HP:0000256, HP:0001387, HP:0001433)

      CaseHPOFreeText: Cardiac disease

      CaseNotHPOs: Mongolian macula, Hernia, Airway obstruction (HP:0011369, HP:0100790, HP:0006536)

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: IDUA activity 0.3 nmol/h/mg protein. The normal range in Chinese controls was found to be 27.2–52 nmol/h/mg protein.

      CaseUrineGAGs: Diagnosis was confirmed biochemically by the demonstration of an increased excretion of urinary dermatan sulfate and heparan sulfate.

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.1227dupG (paper says c.1225dupC but according to the variant sequence this should be c.1227dupG - a known variant)

      Variant1ClinVarID: 929237

      Variant1CAID: CA1139658406

      Variant2: c.236C>T (p.A79V)

      Variant2ClinVarID: 1458769

      Variant2CAID: CA356987

      AdditionalVariants: N/A

      ParentalGenotype: The transmission of sequence variations found in each patient was inferred by sequencing the corresponding exons of the patient's parents - confirmed in trans by parental testing.

      PreviouslyPublished N/A

    3. 34/M

      Case#: Patient 34, male, Han origin, 10 months old (age at diagnosis)

      DiseaseAssertion: MPS1-H

      FamilyInfo: N/A

      CasePresentingHPOs: Global Developmental Delay, Macrocephaly, Joint stiffness, Mongolian macula, Hepatosplenomegaly, Hernia, Airway obstruction (HP:0001263, HP:0000256, HP:0001387, HP:0011369, HP:0001433, HP:0100790, HP:0006536)

      CaseHPOFreeText: Cardiac disease

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: IDUA activity 1.2 nmol/h/mg protein. The normal range in Chinese controls was found to be 27.2–52 nmol/h/mg protein.

      CaseUrineGAGs: Diagnosis was confirmed biochemically by the demonstration of an increased excretion of urinary dermatan sulfate and heparan sulfate.

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.656dupG (Paper refers to the variant as c.657dupG, there is a typo in the article where all duplication variants are one base pair off)

      Variant1ClinVarID: N/A

      Variant1CAID: CA2586965940

      Variant2: c.623G>A (p.G208D)

      Variant2ClinVarID: 554590

      Variant2CAID: CA355961948

      AdditionalVariants: N/A

      ParentalGenotype: The transmission of sequence variations found in each patient was inferred by sequencing the corresponding exons of the patient's parents - confirmed in trans by parental testing.

      PreviouslyPublished N/A

    4. 44/M

      Case#: Patient 44, male, Han origin, 21 years old (age at diagnosis)

      DiseaseAssertion: MPS1-S

      FamilyInfo: N/A

      CasePresentingHPOs: Joint stiffness (HP:0001387)

      CaseHPOFreeText: N/A

      CaseNotHPOs: Global Developmental Delay, Macrocephaly, Mongolian macula, Hepatosplenomegaly, Hernia, Airway obstruction (HP:0001263, HP:0000256, HP:0011369, HP:0001433, HP:0100790, HP:0006536)

      CaseNotHPOFreeText: Cardiac disease

      CaseEnzymeAssay: IDUA activity 1.5 nmol/h/mg protein. The normal range in Chinese controls was found to be 27.2–52 nmol/h/mg protein.

      CaseUrineGAGs: Diagnosis was confirmed biochemically by the demonstration of an increased excretion of urinary dermatan sulfate and heparan sulfate.

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.2T>C (p.Met1Thr)

      Variant1ClinVarID: 639529

      Variant1CAID: CA2801095

      Variant2: c.1037T>G (p.L346R)

      Variant2ClinVarID: 11927

      Variant2CAID: CA256128

      AdditionalVariants: N/A

      ParentalGenotype: The transmission of sequence variations found in each patient was inferred by sequencing the corresponding exons of the patient's parents - confirmed in trans by parental testing.

      PreviouslyPublished N/A

    1. 13

      Case#: 13, Male, 0.8 years (diagnosed), 1.6 years (report), 7.2 kg (weight), 71 cm (height), Iranian

      DiseaseAssertion: Scheie Syndrome

      FamilyInfo: Parents are not consanguineous

      CasePresentingHPOs: HP:0001249, HP:0001999, HP:0100790 (Mental Retardation, Facial Dysmorphic Features, Hernia)

      CaseHPOFreeText: HM/HSM, Chronic Rhinorrhea

      CaseNotHPOs: HP:0000943, HP:0001387, HP:0000365, HP:0007957, HP:0000238 (Multiple Dysostosis, Joint Stiffness, Deafness, Corneal Opacity, Hydrocephalus)

      CaseNotHPOFreeText: Cardiac Manifestations

      CaseEnzymeAssay: IDUA activity 0.75 (μmol/spot.20h)

      CaseUrineGAGs: Quantitative urinary GAG 7.4 (mg/gCr)

      CaseERT: N/A

      CaseBMT: N/A

      GenotypingMethod: Sanger Sequencing

      Variant1: p.S157P

      Variant2: N/A

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished: N/A

    2. 21

      Case#: 21, Female, 0.8 years (diagnosed), 2.8 years (report), 7.5 kg (weight), 80 cm (height), Iranian

      DiseaseAssertion: Hurler Syndrome

      FamilyInfo: Parents are consanguineous

      CasePresentingHPOs:HP:0001249, HP:0001999, HP:0000943, HP:0001387, HP:0100790, HP:0000365, HP:0007957, HP:0000238 (Mental Retardation, Facial Dysmorphic Features, Multiple Dysostosis, Joint Stiffness, Hernia, Deafness, Corneal Capacity, Hydrocephalus)

      CaseHPOFreeText: HM/HSM, Chronic Rhinorrhea, Cardiac Manifestations (mitral stenosis)

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: IDUA activity 0.98 (μmol/spot.20h)

      CaseUrineGAGs: Quantitative urinary GAG 10.5 (mg/gCr)

      CaseERT: N/A

      CaseBMT: N/A

      GenotypingMethod: Sanger Sequencing

      Variant1: Not Provided

      Variant2: N/A

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished: N/A

    3. 7

      Case#: 7, Female, 0.7 years (diagnosed), 12.9 years (report), 14.2 kg (weight), 97 cm (height), Iranian

      DiseaseAssertion: Hurler-Scheie Syndrome

      FamilyInfo: Parents are consanguineous

      CasePresentingHPOs: HP:0001249, HP:0001999, HP:0000943, HP:0001387, HP:0100790, HP:0000365, HP:0000238 (Mental Retardation, Facial Dysmorphic Features, Multiple Dysostosis, Joint Stiffness, Hernia, Deafness, Hydrocephalus)

      CaseHPOFreeText: HM/HSM, Chronic Rhinorrhea

      CaseNotHPOs: HP:0007957 (Corneal Capacity)

      CaseNotHPOFreeText: Cardiac Manifestations

      CaseEnzymeAssay: IDUA activity 0.86 (μmol/spot.20h)

      CaseUrineGAGs: Quantitative urinary GAG 10.11 (mg/gCr)

      CaseERT: N/A

      CaseBMT: N/A

      GenotypingMethod: Sanger Sequencing

      Variant1: p.G84R

      Variant2: N/A

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished: N/A

    1. 3.3.1. Severe patients There were 115 individual genotypes represented in the 380 patients with a severe phenotype and two reported alleles; 31 genotypes were recurrent and 84 genotypes unique (Table 3). The most common genotypes in severe patients were W402X/W402X (109/380; 28.7%), W402X/Q70X (61/380; 16.1%) and Q70X/Q70X (24/380; 6.3%). In total, these two nonsense variants defined the genotypes of 51% (194/380) of severe patients. Of severe patients, 67.6% (257/380) were either homozygous or compound heterozygous for two variants predicted to severely disrupt gene transcription or translation (eg, nonsense variants, frameshifts, consensus splice site disruption or initiator codon variants). No clinically diagnosed attenuated patients were homozygous or compound heterozygous for such variants. Of the remaining 123 severe patients, 76 comprised 19 recurrent genotypes (Table 3) with the remaining 47 patients (12.6%) having unique genotypes (listed in Table S1). Thirty‐seven of the 84 unique genotypes identified in severe patients were compound heterozygous with two severe variants (as defined above) and were comprised of 34 separate severe variants (listed in Table S1). There were nine missense recurrent variants and one intronic recurrent variant that were exclusively seen in severe patients (Table 5A).

      Case#: Severe MPS1 patients

      DiseaseAssertion: Severe MPS I

      FamilyInfo: n/a, "neither the laboratory method used to determine the sequence variants nor whether parental testing confirmed the inheritance or phase of the variants is captured by the Registry"

      CasePresentingHPOs:

      CaseHPOFreeText: "All patients enrolled in the Registry have confirmation of MPS I diagnosis by either mutation analysis or measurement of IDUA levels."

      CaseNotHPOs:

      CaseNotHPOFreeText:

      CasePreviousTesting: n/a

      GenotypingMethod: n/a

      PreviouslyPublished: possible since this is a multinational registry

      Variant: c.1728-1G>C/Q70X

      ClinVar: 556064

      CAID: CA355965306

      SupplementalData: Table S1 has the genotypes listed

    1. younger patient

      Case#: YS of Sibship 1, male, 0.2 years old (age at diagnosis), 0.3 years old (age at ERT enrollment), 4.5 years (duration of ERT)

      DiseaseAssertion: MPS1-HS

      FamilyInfo: Affected female OS (OS of sibship 1).

      CasePresentingHPOs: Hernia (HP:0100790)

      CaseHPOFreeText: N/A

      CaseNotHPOs: HP:0007957, HP:0000943, HP:0002828 (Corneal opacity, dysostosis, joint contractures)

      CaseNotHPOFreeText: Cardiac disease

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: Yes - after almost 5 years of ERT, there was no development of cardiac or musculoskeletal disease.

      CaseBMT: N/A

      Variant1: c.1598C>G (p.P533R)

      Variant1ClinVarID: 11910

      Variant1CAID: CA256112

      Variant2: c.1598C>G (p.P533R)

      Variant2ClinVarID: 11910

      Variant2CAID: CA256112

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    2. sibling who began ERT at <1 year of age

      Case#: YS1 of sibship 5 (see Table 1), male, 0.1 years old (age at diagnosis), 0.3 years old (age at ERT enrollment), 7.6 years (duration of ERT)

      DiseaseAssertion: MPS1-HS

      FamilyInfo: Two affected siblings (OS and YS2 of sibship 5)

      CasePresentingHPOs: HP:0007957 (Corneal opacity)

      CaseHPOFreeText: Cardiac disease

      CaseNotHPOs: HP:0000943, HP:0002828 (Dysostosis, joint contractures)

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: Yes - Remained healthy, with the exception of mild ocular and cardiac symptoms. Psychomotor development remained normal and there were no limitations in ADL. Pulmonary function was between 70 and 94 % of normal at T2.

      CaseBMT: N/A

      Variant1: c.1469T>C (p.L490P)

      Variant1ClinVarID: 11919

      Variant1CAID: CA220503

      Variant2: c.1469T>C (p.L490P)

      Variant2ClinVarID: 11919

      Variant2CAID: CA220503

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    3. the youngest

      Case#: YS of sibship 6 (see Table 1), male, 0.6 years old (age at diagnosis), 3 years old (age at ERT enrollment), 7 years (duration of ERT)

      DiseaseAssertion: MPS-HS

      FamilyInfo: Two affected siblings (OS1 and OS2 of sibship 6)

      CasePresentingHPOs: HP:0007957, HP:0000943, HP:0002828 (Corneal opacity, dysostosis, joint contractures)

      CaseHPOFreeText: Cardiac disease, musculoskeletal symptoms

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: Yes - Pulmonary function was 70–80 % of normal and had no restrictions in ADL.

      CaseBMT: N/A

      Variant1: N/A

      Variant1ClinVarID: N/A

      Variant1CAID: N/A

      Variant2: N/A

      Variant2ClinVarID: N/A

      Variant2CAID: N/A

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. 9/F

      Case#: 9, Female, 3-4 years (onset), 4 years (diagnosed), 20 years (report), deceased (accidentally at 21y)

      DiseaseAssertion: Hurler-Scheie Syndrome

      FamilyInfo: Not Provided

      CasePresentingHPOs: HP:0000256, HP:0001387, HP:0002240, HP:0001744, HP:0001639, HP:001285, HP:0000158, HP:0000280, HP:0000943, HP:0007957 (Macrocephaly, Joint Stiffness (Severe and progressive), Hepatomegaly (Severe at diagnosis but none at report), Splenomegaly (mild at diagnosis and report), Hypertrophic Cardiomyopathy (Progressive), Carpal tunnel syndrome, Large Tongue, Coarse Facial Features, Dysostosis Multiplex, Corneal Clouding)

      CaseHPOFreeText: Mental Development (Uneven Development at 2y; IQ 117 at 12y)

      CaseNotHPOs: HP:0004322 (Short Stature)

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: ERT since 18y

      CaseBMT: N/A

      GenotypingMethod: Not Provided

      Variant1: p.W402X

      Variant1ClinVarID: 11908

      Variant1CAID: CA220498

      Variant2: p.E640fs

      Variant2ClinVarID: 558359

      Variant2CAID: CA355966048

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    2. 20/F

      Case#: 20, Female, infancy (onset), 2 years (diagnosed), 2 years (report)

      DiseaseAssertion: Hurler Syndrome

      FamilyInfo: N/A

      CasePresentingHPOs: HP:0004322, HP:0002240, HP:0001744, HP:0000280, HP:0000943, HP:0007957 (Short Stature, Hepatomegaly, Splenomegaly, Coarse Facial Features, Dysostosis Multiplex, Corneal Clouding)

      CaseHPOFreeText: (Mental Development (delayed since early infancy), Mild LV hypertrophy, Frequent respiratory infections, Vision Impairment and Hearing Loss)

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      GenotypingMethod: Not Provided

      Variant1: p.V620F

      Variant1ClinVarID: 1067173

      Variant1CAID: CA355965934

      Variant2: p.V620F

      Variant2ClinVarID: 1067173

      Variant2CAID: CA355965934

      AdditionalVariants: p.R105Q/R105Q, p.N181/N181, p.A314/A314, p.A361T/A361T, p.T388/T388, p.T410/T410, p.V454I/V454I, p.R489/R489

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. 10

      Case#: Patient 10 (see Table 1), 8 years old - deceased (age at report), 5 years old (age at onset), female, height of 107 cm, weight of 19 kg, located at Nfidha: Industrial region

      DiseaseAssertion: MPS1 - severe

      FamilyInfo: Parents were 1st cousins (see Table 2), aged 42 yrs (M) and 50 yrs (F).

      CasePresentingHPOs: HP:0004322, HP:0001999, HP:0010864, HP:0002240 (Short stature, facial dysmorphia, severe intellectual disability, hepatomegaly)

      CaseHPOFreeText: Pulmonary and cardiac deficiency.

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.1598C>G (p.P533R)

      Variant1ClinVarID: 11910

      Variant1CAID: CA:256112

      Variant2: c.1598C>G (p.P533R)

      Variant2ClinVarID: 11910

      Variant2CAID: CA:256112

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    2. 11

      Case#: Patient 11 (see Table 1), 6 years old (age at report), 1 year old (age at onset), female, height of 120 cm, weight of 20 kg, located in Tunis: Industrial region

      DiseaseAssertion: MPS1 - mild

      FamilyInfo: Parents were 2nd cousins (see Table 2), aged 37 yrs (M) and 44 yrs (F).

      CasePresentingHPOs: HP:0004322, HP:0001999, HP:0030799, HP:0001537 (Short stature, facial dysmorphia, scaphocephaly, umbilical hernia)

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: 0.09 μKat/kg

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.1733T>A (p.L578Q)

      Variant1ClinVarID: N/A

      Variant1CAID: CA355965319

      Variant2: c.1598C>G (p.P533R)

      Variant2ClinVarID: 11910

      Variant2CAID: CA256112

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. 6/M

      Case#: Patient 6, male, Russian

      DiseaseAssertion: MPS1-H

      FamilyInfo: N/A

      CasePresentingHPOs: Severe intellectual disability, corneal clouding, skeletal deformities, hepatosplenomegaly (HP:0010864, HP:0007957, HP:0000924, HP:0001433)

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: 0.06 nmol/mg/h (reference range 135 ± 57 nmol/mg/h)

      CaseUrineGAGs: 238.7 mg GAG/mmol/creatinine (reference range 6.17 ± 3.79 mg GAG/mmol creatinine)

      CaseERT: No

      CaseBMT: No

      Variant1: c.1162dupA (p.Thr388Asnfs*11)

      Variant1ClinVarID: N/A

      Variant1CAID: CA2586965961

      Variant2: c.1162dupA (p.Thr388Asnfs*11)

      Variant2ClinVarID: N/A

      Variant2CAID: CA2586965961

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. Case#: CA-120 ID number, Table S1.1 of Supplementary Material. Female, 8 months old (age at first symptoms), 9 years and 6 months old (age at diagnosis). Stored frozen (-20ºC) 28 yr. May be the sibling of CA-119 due to closeness in ID numbers as well as having the same variants.

      DiseaseAssertion: Attenuated MPS-I

      FamilyInfo: N/A

      CasePresentingHPOs: Ear infections (12 sets of tubes), hernia, joint contractures (HP:0410018, HP:0100790, HP:0100790)

      CaseHPOFreeText: Perri Robin Syndrome, Adenoids removed (2x). Heart Valves, Spine, Contractures (No additional information provided about these symptoms).

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: 399 fmol/punch

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.1651-7C>T

      Variant1ClinVarID: 1147380

      Variant1CAID: CA438057995

      Variant2: c.1205G>A (p.W402X)

      Variant2ClinVarID: 11908

      Variant2CAID: CA220498

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. Hurler disease

      Case#: Patient 49, 2 years old (age at report), male, Indian

      DiseaseAssertion: MPS1-H

      FamilyInfo: N/A

      CasePresentingHPOs: Coarse facial features, hepatosplenomegaly, recurrent infections, dysostosis multiplex, hernia (HP:0000280, HP:0001433, HP:0002719, HP:0000943, HP:0100790)

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: 2.7% (Range of residual enzyme activity: 0.0%-4.8%)

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.(1189+1)(1190–1)(1959_?)del in the paper, unsure how to write this in current nomenclature.

      Variant1ClinVarID: N/A

      Variant1CAID: N/A

      Variant2: c.(1189+1_1190-1)(2003?)del in the paper, unsure how to write this in current nomenclature.

      Variant2ClinVarID: N/A

      Variant2CAID: N/A

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    2. Hurler disease

      Case#: Patient 47, 2 years old (age at report), female, Indian

      DiseaseAssertion: MPS1-H

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: 1.8% (Range of residual enzyme activity: 0.0%-4.8%)

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.(792+1_793-1)_(972+1_973-1)del in the paper, unsure how to write this in current nomenclature.

      Variant1ClinVarID: N/A

      Variant1CAID: N/A

      Variant2: c.(792+1_793-1)_(972+1_973-1)del in the paper, unsure how to write this in current nomenclature.

      Variant2ClinVarID: N/A

      Variant2CAID: N/A

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    3. Hurler disease

      Case#: Patient 46, 9 years old (age at report), female, Indian

      DiseaseAssertion: MPS1-H

      FamilyInfo: N/A

      CasePresentingHPOs: Coarse facial features, hepatosplenomegaly, joint contractures (HP:0000280, HP:0001433, HP:0002828)

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: 0.0% (Range of residual enzyme activity: 0.0%-4.8%)

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.1898C>T (p.Ser633Leu)

      Variant1ClinVarID: 556406

      Variant1CAID: CA355966010

      Variant2: c.1898C>T (p.Ser633Leu)

      Variant2ClinVarID: 556406

      Variant2CAID: CA355966010

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    4. Hurler disease

      Case#: Patient 36, 6 years old (age at report), male, Indian

      DiseaseAssertion: MPS1-H

      FamilyInfo: N/A

      CasePresentingHPOs: Coarse facial features, hepatosplenomegaly, joint contractures, corneal clouding, recurrent infections, dysostosis multiplex, intellectual disability, hernia (HP:0000280, HP:0001433, HP:0002828, HP:0007957, HP:0002719, HP:0000943, HP:0001249, HP:0100790)

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: 2.5% (Range of residual enzyme activity: 0.0%-4.8%)

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.1373T>C (p.Leu458Pro)

      Variant1ClinVarID: N/A

      Variant1CAID: CA355964255

      Variant2: c.1373T>C (p.Leu458Pro)

      Variant2ClinVarID: N/A

      Variant2CAID: CA355964255

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. 18

      Case#: Patient 18, male, 2 years (age at presentation).

      DiseaseAssertion: MPS1-H

      FamilyInfo: Consanguinity in the family present for this patient.

      CasePresentingHPOs: Corneal clouding, coarse facial features, dystosis multiplex, global developmental delay, hepatomegaly, joint stiffness, Mongolian blue spots, splenomegaly (HP:0007957, HP:0000256, HP:0000943, HP:0001263, HP:0002240, HP:0001387, HP:0011369, HP:0001744)

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.1096_1099delACCG (p.Thr366Argfs*73)

      Variant1ClinVarID: 1065522

      Variant1CAID: CA2499217017

      Variant2: c.1096_1099delACCG (p.Thr366Argfs*73)

      Variant2ClinVarID: 1065522

      Variant2CAID: CA2499217017

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    2. 9

      Case#: Patient 9, female, 1 year (age at presentation).

      DiseaseAssertion: MPS1-H

      FamilyInfo: Consanguinity in the family present for this patient.

      CasePresentingHPOs: Corneal clouding, coarse facial features, dysostosis multiplex, global developmental delay, hepatomegaly, joint stiffness, splenomegaly, recurrent respiratory infections, umbilical hernia (HP:0007957, HP:0000256, HP:0000943, HP:0001263, HP:0002240, HP:0001387, HP:0001744, HP:0002205, HP:0001537)

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.362T>C (p.L121P)

      Variant1ClinVarID: 1343382

      Variant1CAID: CA355961174

      Variant2: c.362T>C (p.L121P)

      Variant2ClinVarID: 1343382

      Variant2CAID: CA355961174

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    3. 7

      Case#: Patient 7, male, 1 month (age at presentation).

      DiseaseAssertion: MPS1-H

      FamilyInfo: Consanguinity in the family not present for this patient. Family conducted a prenatal diagnosis on the next pregnancy and CVS to be unaffected

      CasePresentingHPOs: Corneal clouding, coarse facial features, dysostosis multiplex, global developmental delay, hepatomegaly, joint stiffness, splenomegaly, umbilical hernia (HP:0007957, HP:0000256, HP:0000943, HP:0001263, HP:0002240, HP:0001387, HP:0001744, HP:0001537)

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.362T>C (p.L121P)

      Variant1ClinVarID: 1343382

      Variant1CAID: CA355961174

      Variant2: c.362T>C (p.L121P)

      Variant2ClinVarID: 1343382

      Variant2CAID: CA355961174

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. Case#: Patient #1 (see Table 2), male, 6 months old (age at diagnosis), 7 years old (age at report)

      DiseaseAssertion: MPS I

      FamilyInfo: Born from a consanguineous marriage

      CasePresentingHPOs: Scoliosis, developmental delay, short stature, macrocephaly, coarse facial features, hepatomegaly (HP:0002650, HP:0001263, HP:0004322, HP:0000256, HP:0000256, HP:0002240)

      CaseHPOFreeText: Irregular chest, respiratory problems

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: α-L-iduronidase 1.18 nmol/spot. The activity of this enzyme is below its reference (450–2600 nmol/spot).

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.469T>C (p.S157P)

      Variant1ClinVarID: N/A

      Variant1CAID: CA355961573

      Variant2: c.469T>C (p.S157P)

      Variant2ClinVarID: N/A

      Variant2CAID: CA355961573

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. PKMPS1P3

      Case#: PKMPS1P3, 6 months old (age at presentation), female, Pakastani, born full term through C-section

      DiseaseAssertion: MPS-I

      FamilyInfo: Born to consanguineous parents

      CasePresentingHPOs: Abdominal distension (at 6 months), difficulty breathing, macrocephaly, coarse facial features, hernia, cardiomyopathy, recurrent respiratory infections, recurrent ear infections, joint contractures (HP:0003270, HP:0002094, HP:0000256, HP:0000256, HP:0100790, HP:0001638, HP:0002788, HP:0410018, HP:0100790)

      CaseHPOFreeText: Abnormal spine position. The liver span was 10 cm, having soft to firm consistency. The spleen was palpable and soft. Bone pains. X-ray of the skull showed reverse J-shaped sella sutural diastasis, and the X-ray of the hand showed proximal tapering Q metatarsal. Thick broad arc-shaped ribs, thick skull calvarium, with apparently enlarged cardiac size was observed in the chest X-ray.

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.314G>A (p.R105Q)

      Variant1ClinVarID: 92641

      Variant1CAID: CA145881

      Variant2: c.314G>A (p.R105Q)

      Variant2ClinVarID: 92641

      Variant2CAID: CA145881

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    2. PKMPS1P1

      Case#: PKMPS1P1, 4 years old (age at presentation), female

      DiseaseAssertion: MPS-I

      FamilyInfo: Born to a consanguineous couple

      CasePresentingHPOs: Joint stiffness, coarse facial features, dysostosis multiplex, hernia (HP:0001387, HP:0000256, HP:0000943, HP:0100790)

      CaseHPOFreeText: Difficulty walking, limitation in the range of movements of joints. Failure to gain height and weight.

      CaseNotHPOs: Developmental delay (HP:0001263)

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.1598C>G (p.P533R)

      Variant1ClinVarID: 11910

      Variant1CAID: CA256112

      Variant2: c.1598C>G (p.P533R)

      Variant2ClinVarID: 11910

      Variant2CAID: CA256112

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

  2. watermark.silverchair.com watermark.silverchair.com
    1. 1

      Case#: No additional case information provided.

      DiseaseAssertion: MPS1-H

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.653T>C (p.L218P)

      Variant1ClinVarID: 222995

      Variant1CAID: CA356986

      Variant2: c.653T>C (p.L218P)

      Variant2ClinVarID: 222995

      Variant2CAID: CA356986

      AdditionalVariants: In the paper an additional variant is listed on the same allele as "G387 + 6c->t". It seems that the current nomenclature for this variant is "c.299+6C>T". This variant is classified as benign by the LD VCEP.

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. 9

      Case#: Patient 9 (see Table 2), 37 weeks, 2 days (Gestational age)

      DiseaseAssertion: MPS1-H

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: Upper respiratory tract involvement

      CaseNotHPOs: Inguinal hernia (HP:0000023)

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.208C>T (p.Q70X)

      Variant1ClinVarID: 11909

      Variant1CAID: CA204563

      Variant2: c.653T>C (p.L218P)

      Variant2ClinVarID: 222995

      Variant2CAID: CA:356986

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    2. 21

      Case#: Patient 21 (see Table 2), 41 weeks, 2 days (Gestational age)

      DiseaseAssertion: MPS1-H/S

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: Inguinal hernia (HP:0000023)

      CaseNotHPOFreeText: Upper respiratory tract involvement

      CaseEnzymeAssay: 0.35 nmol x mg-1 × hr-1

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.653T>C (p.L218P)

      Variant1ClinVarID: 222995

      Variant1CAID: CA356986

      Variant2: c.943G>T (p.D315Y)

      Variant2ClinVarID: N/A

      Variant2CAID: CA:355962740

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    3. 18

      Case#: Patient 18 (see Table 2), 40 weeks (Gestational age)

      DiseaseAssertion: MPS1-H/S

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: Upper respiratory tract involvement

      CaseNotHPOs: Inguinal hernia (HP:0000023)

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: 0.77 nmol x mg-1 × hr-1

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.1205G>A (p.W402X)

      Variant1ClinVarID: 11908

      Variant1CAID: CA220498

      Variant2: c.1513C>G (p.R505G)

      Variant2ClinVarID: 1482722

      Variant2CAID: CA:355964784

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    4. 284

      Case#: Patient 28 (see Table 2), 40 weeks, 5 days (Gestational age)

      DiseaseAssertion: MPS1-S

      FamilyInfo: Sibling of Patient 29 (see Table 2)

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: Inguinal hernia (HP:0000023)

      CaseNotHPOFreeText: Upper respiratory tract involvement

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.474-2A>G (new nomenclature:c.386-2A>G)

      Variant1ClinVarID: 222994

      Variant1CAID: CA356991

      Variant2: c.1148G>A (p.R383H)

      Variant2ClinVarID: 558189

      Variant2CAID: CA:2802205

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    5. 13

      Case#: Patient 13 (see Table 2), 38 weeks, 3 days (Gestational age)

      DiseaseAssertion: MPS1-H

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: Upper respiratory tract involvement

      CaseNotHPOs: Inguinal hernia (HP:0000023)

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: 0.43 nmol x mg-1 × hr-1

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.1205G>A (p.W402X)

      Variant1ClinVarID: 11908

      Variant1CAID: CA220498

      Variant2: c.653T>C (p.L218P)

      Variant2ClinVarID: 222995

      Variant2CAID: CA:356986

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

  3. watermark.silverchair.com watermark.silverchair.com
    1. Case#: Patient is from The Netherlands

      DiseaseAssertion: MPSI-H

      FamilyInfo: Patient has consanguinity between parents.

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.653T>C (p.L218P)

      Variant1ClinVarID: 222995

      Variant1CAID: CA356986

      Variant2: c.653T>C (p.L218P)

      Variant2ClinVarID: 222995

      Variant2CAID: CA356986

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. MPS I_Case 01

      Case#: MPS I_Case 01, male newborn

      DiseaseAssertion: MPS type I, MPS I, MPS-I, attenuated MPS I

      FamilyInfo: MPS I_Case 01 and MPS I_Case 05 are siblings

      CasePresentingHPOs:

      CaseHPOFreeText:

      CaseNotHPOs:

      CaseNotHPOFreeText: This proband is believed to be an affected MPS-patient however, the proband did not have any obvious clinical symptoms to date (up to two years of age). The paper states that this attenuated MPS I case will need a long term follow up.

      CaseEnzymeAssay: Proband identified by newborn screening. alpha-L-iduronidase activity in dried blood spot sample is 0.42 umole/L/Hr; this is below the study’s DBS enzyme activity cutoff value of 3 umol/L/h

      CaseUrineGAGs: Urine DMB GAG ratio is 107 mg/mmol creatinine. 10.9 ug/ml dermatan sulfate in urine (<0.41 ug/ml is the reference cutoff for dermatan sulfate in this study). 2.67 ug/ml heparan sulfate in urine (<0.8 ug/ml is the reference cutoff for heparan sulfate in this study). 7/75 ug/ml keratan sulfate in urine.

      CaseERT: Don’t know (would assume no since the proband is a newborn)

      CaseBMT: Don’t know (would assume no since the proband is a new born)

      Variant1: c.300–3C>G

      Variant1ClinVarID: 551563

      Variant1CAID: CA549265042

      Variant2: c.1874A>C, p.Y625S

      Variant2ClinVarID: 2910181

      Variant2CAID: CA355965961

      AdditionalVariants: No additional variants are mentioned

      ParentalGenotype: No parental testing results are available

      PreviouslyPublished No statement from the author indicating the proband is previously published. Since this is a newborn study, I strongly believe this is the proband’s first time being published.

    1. 10 MPS I patients

      Case#: MPS 1 patient

      DiseaseAssertion: N/A

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.208C>T (p.Q70X)

      Variant1ClinVarID: 11909

      Variant1CAID: CA204563

      Variant2: c.943G>T (p.D315Y)

      Variant2ClinVarID: 4539822

      Variant2CAID: CA355962740

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. 1/m

      Case#: 1, Male, Han Chinese

      DiseaseAssertion: Hurler Syndrome

      FamilyInfo: Not Provided

      CasePresentingHPOs: HP:0001249, HP:0007957, HP:0001433 (Mental Retardation (severe), Corneal Clouding, Hepatosplenomegaly)

      CaseHPOFreeText: Skeletal Deformities

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: 0 Leukocyte IDUA activity (nmol/h/mg protein) (isolated leukocytes in the latter)

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      GenotypingMethod: Using the artificial substrate 4-methyl-umbelliferyl α-L-iduronide (Sigma)

      Variant1: c.1190-1G>A

      Variant1ClinVarID: 1204494

      Variant1CAID: CA355963511

      Variant2: Not Identified

      Variant2ClinVarID: N/A

      Variant2CAID: N/A

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    2. 8/m

      Case#: 8, Male, Han Chinese

      DiseaseAssertion: Hurler Syndrome

      FamilyInfo: Not Provided

      CasePresentingHPOs: HP:0001249, HP:0007957, HP:0001433 (Mental Retardation (severe), Corneal Clouding, Hepatosplenomegaly)

      CaseHPOFreeText: Skeletal Deformities

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: 0 Leukocyte IDUA activity (nmol/h/mg protein) (isolated leukocytes in the latter)

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      GenotypingMethod: Using the artificial substrate 4-methyl-umbelliferyl α-L-iduronide (Sigma)

      Variant1: c.792+1G>T

      Variant1ClinVarID: N/A

      Variant1CAID: CA355962278

      Variant2: Not identified

      Variant2ClinVarID: N/A

      Variant2CAID: N/A

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. Case#: Patient 2, 12 years old, Iranian

      DiseaseAssertion: MPS1-S (Attenuated)

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: 0.3 µmol/g.h (Normal ranges: 10-50 µmol/g.h)

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.401G>T (p.G134V)

      Variant1ClinVarID: N/A

      Variant1CAID: CA355961317

      Variant2: c.401G>T (p.G134V)

      Variant2ClinVarID: N/A

      Variant2CAID: CA355961317

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. Case#: Patient 2, Turkish

      DiseaseAssertion: MPS1-H

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.192C>A (p.Y64X)

      Variant1ClinVarID: 11914

      Variant1CAID: CA256113

      Variant2: c.979G>C (p.A327P); Table states c.1067G>C instead of c.979G>C. This variant is not in ClinVar or has a CAID. Assuming there is a typo and this is c.979G>C

      Variant2ClinVarID: 167190

      Variant2CAID: CA234128

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. 1

      Case#: Infant 1

      DiseaseAssertion: N/A

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: 5.1 nmol/h/mg; normal range, 15.1-50.9 nmol/h/mg

      CaseUrineGAGs: 22.6 mg/mmol creatinine; normal ranges, 0-53 mg/mmol creatinine

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.298A>G (p.R100G)

      Variant1ClinVarID: 2058952

      Variant1CAID: CA2801159

      Variant2: c.300-20C>T

      Variant2ClinVarID: 1415135

      Variant2CAID: CA2801857

      AdditionalVariants: c.1345C>A (p.H449N)

      ParentalGenotype: c.298A>G (maternal); c.300-20C>T (paternal); c.1345C>A (paternal)

      PreviouslyPublished N/A

    1. infant’s

      Case#: Infant (Pregnancy was terminated at 35 gestational weeks due to severe MPS I diagnosis, weight of 3140 g (94th percentile), length of 48 cm (80th percentile), occipitofrontal circumference of 34 cm (83rd percentile).

      DiseaseAssertion: MPS1

      FamilyInfo: Proband 1's mother and father were not consanguineous, their phenotype was normal, and they had no significant personal or family histories. Mother had previously had given birth to a healthy infant.

      CasePresentingHPOs: Single umbilical artery, hepatosplenomegaly, hepatomegaly, coarse facial features, broad nasal tip, micrognathia, thin upper lip vermilion, hypertelorism, plagiocephaly (HP:0001195, HP:0001433, HP:0002240, HP:0000280, HP:0000455, HP:0000347, HP:0000219, HP:0000316, HP:0001357)

      CaseHPOFreeText: Dysmorphic features (including a long and broad philtrum), a few echogenic spots in the liver, spleen, peritoneum, and thymus, hepatic overhang of 4 cm, microretrognatism, full and drooping cheeks, large, badly hemmed ears with bulky lobes, bulging eyes, marked suborbital folds, and micro vacuolized appearance of Hofbauer cells.

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: Deficiency in α-L-iduronidase activity. Measure value was 0.3 µkat/kg with a laboratory control of 33.8 µkat/kg.

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.590G>A (p.G197D)

      Variant1ClinVarID: 554670

      Variant1CAID: CA91167598

      Variant2: c.1139dup (p.L381Afs*18)

      Variant2ClinVarID: 3340107

      Variant2CAID: CA3046517234

      AdditionalVariants: N/A

      ParentalGenotype: c.590G>A (inherited from the mother), c.1139dup (inherited from the father)

      PreviouslyPublished N/A

    1. patients

      Case#: Patient 1, 1-year old at the start of ERT

      DiseaseAssertion: MPS1-H - confirmed diagnosis of MPS 1 by enzymatic and mutation analysis

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: Urine GAGs are displayed in a figure and show the level at the start of ERT to 24-months later. At the start, urine GAGs appear to be slightly above 100 mg/mmol creatinine. After 24-months they decreased to be slightly below 50 mg/mmol creatinine. Normal values for >2-year olds are 8-20 mg/mmol creatinine.

      CaseERT: Yes - started at 1-year old and was given once every week

      CaseBMT: No

      Variant1: c.494-1G>A (in the paper, the variant is labeled as IVS4-1G>A)

      Variant1ClinVarID: 557942

      Variant1CAID: CA355961634

      Variant2: c.494-1G>A (in the paper, the variant is labeled as IVS4-1G>A)

      Variant2ClinVarID: 557942

      Variant2CAID: CA355961634

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    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

    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

    1. Case#: 23015, Age 74, Male, Blood Type A+ (Table S3)

      Disease Assertion: VWD1

      FamilyInfo: The patient is the only member of Family# 2310.

      Parental Genotype: Not listed

      CasePresentingHPOs: N/A

      CaseHPOFreeText:VWF:Ag: 18, VWF:RCo:17.3, FVIII:C:19, VWF:CB:13

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: Bleeding Score 3

      Protein Expression: N/A

      CasePreviousTesting: 48,48 Access-Array amplification. NGS Molecular analysis was performed. Sanger sequencing was used to validate selected mutations

      Gene: VWF

      Variant: NM_000552.4:c.2546+132G>A(p.=) and NM_000552.4:c.3614G>A (p.Arg1205His)

      ClinVar: 308 ClinVar

      CAID: CA232299449 and CA114160 CAID1 CAID2

      gnomAD: MAF of 0.001179 ( 1/848 alleles) in the Latino population (CA232299449). gnomAD

    2. Case#: 01010, Age 55, Male, Blood Type O+ (Table S3)

      Disease Assertion:VWD1

      FamilyInfo: Not listed

      Parental Genotype:Not listed

      CasePresentingHPOs:

      CaseHPOFreeText: Bleeding score 5, VWF:Ag 27, VWF:RCo: 30, FVIII:C 51, VWF:CB: 32

      CaseNotHPOs:

      CaseNotHPOFreeText:

      Protein Expression:

      CasePreviousTesting: 48,48 Access-Array amplification. NGS Molecular analysis was performed. Sanger sequencing was used to validate selected mutations.

      Gene: VWF

      Variant:NM_000552.4(VWF):c.4751A>G (p.Tyr1584Cys)

      ClinVar: 310

      ClinVarID

      CAID: CA114162

      CAID

      gnomAD: MAF of 0.004024 (519/128972 alleles) in the European (non-Finnish) population.

      gnomAD

    3. Case#: 32005, Age 28, Female, Blood Type O- (Table S3)

      Disease Assertion: VWD 1

      FamilyInfo: The patient is the only member of Family# 3205.

      Parental Genotype: Not listed

      CasePresentingHPOs: N/A

      CaseHPOFreeText: VWF:Ag: 30, VWF:RCo: 25, FVIII:C: 25, VWF:CB: 32

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: Bleeding Score 4

      Protein Expression: N/A

      CasePreviousTesting: 48,48 Access-Array amplification. NGS Molecular analysis was performed. Sanger sequencing was used to validate selected mutations.

      Gene: VWF

      Variant: NM_000552.4:c.2546+132G>A (p.=) and NM_000552.4:c.4751A>G (p.Tyr1584Cys)

      ClinVar: 310

      CAID: CA232299449 and CA114162 CAID1 CAID2

      gnomAD: MAF of 0.001179 (1/848 alleles) in the Latino population (CA232299449) gnomAD

      MAF of 0.004024 (519/ 128972 alleles) in the European (non-Finnish) population. gnomAD

    4. Case#: 02023, Age 28, Female, Blood type O+ (Table S3)

      Disease Assertion: VWD 1

      FamilyInfo: Family# 0206. 3 family members were included in the study. Everyone in the family have the same variant and all have type 1 VWD.

      Parental Genotype: Not listed

      CasePresentingHPOs:

      CaseHPOFreeText: Bleeding score 18, VWF:Ag: 5.5, VWF:RCo: 8, FVIII:C: 11, VWF:CB: 4.2

      CaseNotHPOs:

      CaseNotHPOFreeText:

      Protein Expression:

      CasePreviousTesting: 48,48 Access-Array amplification. NGS Molecular analysis was performed. Sanger sequencing was used to validate selected mutations.

      Gene: VWF

      Variant: NM_000552.4:c.3614G>A (p.Arg1205His)

      ClinVar: 308 ClinVar

      CAID: CA114160 CAID

      gnomAD: N/A

    5. Case#: 27018, Age 31, Male, Blood Type O+ (Table S3)

      Disease Assertion: VWD 1

      FamilyInfo: The patient is one out of two members of Family#2709. Both patients variants were not determined.

      Parental Genotype: Not listed

      CasePresentingHPOs: N/A

      CaseHPOFreeText: VWF:Ag:27, VWF:RCo:28.5, FVIII:C:59, VWF:CB:25

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: Bleeding Score 2

      Protein Expression: N/A

      CasePreviousTesting: 48,48 Access-Array amplification. NGS Molecular analysis was performed. Sanger sequencing was used to validate selected mutations.

      Gene: VWF

      Variant: Not determined

      ClinVar: N/A

      CAID: N/A

      gnomAD: N/A

    6. Case#: 21006, Age 40, Male, Blood Type O+ (Table S3)

      Disease Assertion: VWD 1

      FamilyInfo: The patient is one of 4 members of Family# 2103. Each patient has the p.Gly2083Asp variant. Some of the patients have a second variant.

      Parental Genotype: Not listed

      CasePresentingHPOs: N/A

      CaseHPOFreeText: Bleeding Score 8, VWF:Ag: 11, VWF:RCo: 10, FVIII:C:29, VWF:CB: 10.3

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      Protein Expression: N/A

      CasePreviousTesting: 48,48 Access-Array amplification. NGS Molecular analysis was performed. Sanger sequencing was used to validate selected mutations

      Gene: VWF

      Variant: NM_000552.4:c.6248G>A (p.Gly2083Asp)

      ClinVar: N/A

      CAID: CA383492072 CAID

      gnomAD: N/A

    7. Case#: 29002, Age 38, Female, Blood Type O+ (Table S3)

      Disease Assertion: VWD 1

      FamilyInfo: The patient is the only member of Family#2902.

      Parental Genotype: Not listed

      CasePresentingHPOs: N/A

      CaseHPOFreeText: Bleeding score 7, VWF:Ag: 22, VWF:RCo: 17, FVIII:C: 54, VWF:CB:17

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      Protein Expression: N/A

      CasePreviousTesting: 48,48 Access-Array amplification. NGS Molecular analysis was performed. Sanger sequencing was used to validate selected mutations.

      Gene: VWF

      Variant: NM_000552.4:c.3223-7_3236dup (p.Pro1079_Tyr1080insLeuGlnValAspProGluPro) and NM_000552.4(VWF):c.5277C>T (p.Asp1759=)

      ClinVar: 310061 ClinVar

      CAID: CA1139532066 and CA6402333 CAID1 CAID2

      gnomAD: MAF of 0.01423 (1837/129090 alleles) in the European (non-Finnish) population (CA6402333). gnomAD

    8. Case#: 30008, Age 24, Female, Blood Type A+ (Table S3)

      Disease Assertion: VWD 1

      FamilyInfo: The patient is one of two members of Family #3006. Both patients have the same variant.

      Parental Genotype: Not listed

      CasePresentingHPOs: N/A

      CaseHPOFreeText: Bleeding Score 12, VWF:Ag:18, VWF:RCo:19.3, FVIII:C: 35, VWF:CB: 21

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      Protein Expression: N/A

      CasePreviousTesting: 48,48 Access-Array amplification. NGS Molecular analysis was performed. Sanger sequencing was used to validate selected mutations.

      Gene: VWF

      Variant: NM_000552.4:c.6536C>T (p.Ser2179Phe)

      ClinVar: 100442 ClinVar

      CAID: CA228746 CAID

      gnomAD: N/A

    9. Case#: 35008, Age 64, Male, Blood Type A+ (Table S3)

      Disease Assertion: VWD 1

      FamilyInfo: The patient is the only member of Family# 3503.

      Parental Genotype: Not listed

      CasePresentingHPOs: N/A

      CaseHPOFreeText: VWF:Ag: 5.3, VWF:RCo:5, FVIII:C: 10, VWF:CB: 4.9

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: Bleeding Score 2

      Protein Expression: N/A

      CasePreviousTesting: 48,48 Access-Array amplification. NGS Molecular analysis was performed. Sanger sequencing was used to validate selected mutations.

      Gene: VWF

      Variant: NM_000552.4:c.1625C>G (p.Ala542Gly), NM_000552.4:c.5198T>C (p.Leu1733Pro), and NM_000552.4:c.6187C>T (p.Pro2063Ser)

      ClinVar: 381621 and 100436 ClinVar1 ClinVar2

      CAID: CA6403319, CA383496267, and CA202650 CAID1 CAID2 CAID3

      gnomAD: MAF of 0.001355 (48/ 35418 alleles) in the Latino population (CA6403319). gnomAD

      MAF of 0.04854 (1486/30616 alleles) in the South Asian population (CA202650). gnomAD

    10. Case#: 37005, Age 39, Female, Blood Type O+ (Table S3)

      Disease Assertion: VWD 1

      FamilyInfo: The patient is the only member of Family#3705.

      Parental Genotype: Not listed

      CasePresentingHPOs: N/A

      CaseHPOFreeText: Bleeding Score 9, VWF:Ag:26, VWF:RCo: 18, FVIII:C: 44, VWF:CB: 18

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      Protein Expression: N/A

      CasePreviousTesting: 48,48 Access-Array amplification. NGS Molecular analysis was performed. Sanger sequencing was used to validate selected mutations.

      Gene: VWF

      Variant: NM_000552.4:c.2878C>T (p.Arg960Trp)

      ClinVar: N/A

      CAID: CA6402916 CAID

      gnomAD: MAF of 0.0004900 (50/ 30612 alleles) in the South Asian population. gnomAD

    11. Case#: 30006, Age 70, Female, Blood Type A- (Table S3)

      Disease Assertion: VWD 1

      FamilyInfo: The patient is the only member of Family#3005.

      Parental Genotype: Not listed

      CasePresentingHPOs: N/A

      CaseHPOFreeText: Bleeding Score 17, VWF:Ag: 24, VWF:RCo: 29.4, FVIII:C:30, VWF:CB: 28

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      Protein Expression: N/A

      CasePreviousTesting: 48,48 Access-Array amplification. NGS Molecular analysis was performed. Sanger sequencing was used to validate selected mutations.

      Gene: VWF

      Variant: NM_000552.4:c.5336G>T(p.Arg1779Leu)

      ClinVar: N/A

      CAID: CA383495656 CAID

      gnomAD: MAF of 0.00002891 ( 1/ 34592 alleles) in the Latino population. gnomAD

    1. 6

      Case: Patient 6 (Family B), male, 15yo

      DiseaseAssertion: VWD2B

      FamilyInfo: NA

      ParentalGenotype(s): NA

      CasePresentingHPOs: HP:0030132, HP:0030129, HP:0030130, HP:0011871, HP:0012147

      (Absence of large von Willebrand factor multimers, impaired ristocetin cofactor assay activity, Impaired von Willebrand factor collagen binding activity, Impaired RIPA, Reduced quantity of VWF)

      CaseHPOFreeText: blood group A, Platelet count x103/μl = 180, PFA 100 sec = >300, SPA % = 0, MADR mg/mL = 0.6, VWF:Ag U/dL = 30.9, VWF:CB U/dL = 12.5, VWF:CB ratio = 0.41, VWF:RCo U/dL = 11.4, VWF:RCo ratio = 0.37, Platelet VWF U/dL = 79.1, FVIII U/dL = 49.3, BAT F/M = 4

      CaseNOTHPOs:

      CaseNOTHPOFreeText:

      CasePreviousTesting: NA

      GenotypingMethod: Sequencing of exon 28 of VWF

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.3922C>T (p.Arg1308Cys)

      HGVS: NM_000552.4(VWF):c.3922C>T (p.Arg1308Cys)

      ClinVarID: 289; https://www.ncbi.nlm.nih.gov/clinvar/variation/289/

      CAID: NA

      gnomAD: absent

    2. 1

      Case: Patient 1 (Family A), female, 48yo

      DiseaseAssertion: VWD2B

      FamilyInfo: NA

      ParentalGenotype(s): NA

      CasePresentingHPOs: HP:0030129, HP:0030130, HP:0011871, HP:0012147

      (impaired ristocetin cofactor assay activity, Impaired von Willebrand factor collagen binding activity, Impaired RIPA, Reduced quantity of VWF)

      CaseHPOFreeText: blood group A, Platelet count x103/μl = 232, PFA 100 sec = NA, SPA % = 12, MADR mg/mL = 0.45, VWF:Ag U/dL = 160.6, VWF:CB U/dL = 135.6, VWF:CB ratio = 0.84, VWF:RCo U/dL = 132.8, VWF:RCo ratio = 0.83, Platelet VWF U/dL = 92.0, FVIII U/dL = 78.0, BAT F/M = 6

      CaseNOTHPOs:

      CaseNOTHPOFreeText:

      CasePreviousTesting: NA

      GenotypingMethod: Sequencing of exon 28 of VWF

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.4115T>G (p.Ile1372Ser)

      HGVS: NM_000552.4(VWF):c.4115T>G (p.Ile1372Ser)

      ClinVarID: 100327; https://www.ncbi.nlm.nih.gov/clinvar/variation/100327/

      gnomAD: MAF = 0.00006175 (7/113356 alleles) in the European (non-Finnish) population; https://gnomad.broadinstitute.org/variant/12-6128469-A-C?dataset=gnomad_r2_1

    3. 11

      Case: Patient 11 (Family C), male, 80yo

      DiseaseAssertion: VWD2B

      FamilyInfo: NA

      ParentalGenotype(s): NA

      CasePresentingHPOs: HP:0030132, HP:0030129, HP:0030130, HP:0011871, HP:0012147

      (Absence of large von Willebrand factor multimers, impaired ristocetin cofactor assay activity, Impaired von Willebrand factor collagen binding activity, Impaired RIPA, Reduced quantity of VWF)

      CaseHPOFreeText: blood group O, Platelet count x103/μl = 182, PFA 100 sec = >300, SPA % = 0, MADR mg/mL = 0.45, VWF:Ag U/dL = 39.5, VWF:CB U/dL = 9.3, VWF:CB ratio = 0.24, VWF:RCo U/dL = 23.3, VWF:RCo ratio = 0.59, Platelet VWF U/dL = 113.90, FVIII U/dL = 52.1, BAT F/M = 14

      CaseNOTHPOs:

      CaseNOTHPOFreeText:

      CasePreviousTesting: NA

      GenotypingMethod: Sequencing of exon 28 of VWF

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.3922C>T (p.Arg1308Cys)

      HGVS: NM_000552.4(VWF):c.3922C>T (p.Arg1308Cys)

      ClinVarID: 289; https://www.ncbi.nlm.nih.gov/clinvar/variation/289/

      CAID: NA

      gnomAD: absent

    4. 7

      Case: Patient 7 (Family B), male, 81yo

      DiseaseAssertion: VWD2B

      FamilyInfo: NA

      ParentalGenotype(s): NA

      CasePresentingHPOs: HP:0030132, HP:0030129, HP:0030130, HP:0011871

      (Absence of large von Willebrand factor multimers, impaired ristocetin cofactor assay activity, Impaired von Willebrand factor collagen binding activity, Impaired RIPA)

      CaseHPOFreeText: blood group A, Platelet count x103/μl = 165, PFA 100 sec = >300, SPA % = NA, MADR mg/mL = 0.6, VWF:Ag U/dL = 166.4, VWF:CB U/dL = 30.0, VWF:CB ratio = 0.18, VWF:RCo U/dL = 112.0, VWF:RCo ratio = 0.67, Platelet VWF U/dL = NA, FVIII U/dL = 136.0, BAT F/M = NA

      CaseNOTHPOs:

      CaseNOTHPOFreeText:

      CasePreviousTesting: NA

      GenotypingMethod: Sequencing of exon 28 of VWF

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.3922C>T (p.Arg1308Cys)

      HGVS: NM_000552.4(VWF):c.3922C>T (p.Arg1308Cys)

      ClinVarID: 289; https://www.ncbi.nlm.nih.gov/clinvar/variation/289/

      CAID: NA

      gnomAD: absent

    5. 17

      Case: Patient 17 (Family E), female, 24yo

      DiseaseAssertion: VWD2B

      FamilyInfo: NA

      ParentalGenotype(s): NA

      CasePresentingHPOs: HP:0030132, HP:0030129, HP:0030130, HP:0011871, HP:0012147

      (Absence of large von Willebrand factor multimers, impaired ristocetin cofactor assay activity, Impaired von Willebrand factor collagen binding activity, Impaired RIPA, Reduced quantity of VWF)

      CaseHPOFreeText: blood group O, Platelet count x103/μl = 65, PFA 100 sec = >300, SPA % = 22.5, MADR mg/mL = 0.15, VWF:Ag U/dL = 35.9, VWF:CB U/dL = 15.6, VWF:CB ratio = 0.44, VWF:RCo U/dL = 14.4, VWF:RCo ratio = 0.40, Platelet VWF U/dL = 140.3, FVIII U/dL = 35.9, BAT F/M = 13

      CaseNOTHPOs:

      CaseNOTHPOFreeText:

      CasePreviousTesting: NA

      GenotypingMethod: Sequencing of exon 28 of VWF

      PreviouslyPublished: NA

      Gene: VWF

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

      HGVS: NM_000552.4(VWF):c.3946G>A (p.Val1316Met)

      ClinVarID: 290; https://www.ncbi.nlm.nih.gov/clinvar/variation/290/

      CAID: NA

      gnomAD: absent

    6. 4

      Case: Patient 4 (Family A), male, 43yo

      DiseaseAssertion: VWD2B

      FamilyInfo: NA

      ParentalGenotype(s): NA

      CasePresentingHPOs: HP:0030132, HP:0030129, HP:0030130, HP:0011871, HP:0012147

      (Absence of large von Willebrand factor multimers, impaired ristocetin cofactor assay activity, Impaired von Willebrand factor collagen binding activity, Impaired RIPA, Reduced quantity of VWF)

      CaseHPOFreeText: blood group A, Platelet count x103/μl = 163, PFA 100 sec = >300, SPA % = 0, MADR mg/mL = 0.6, VWF:Ag U/dL = 42.8, VWF:CB U/dL = 10.6, VWF:CB ratio = 0.25, VWF:RCo U/dL = 25.2, VWF:RCo ratio = 0.58, Platelet VWF U/dL = 132.7, FVIII U/dL = 47.1, BAT F/M = 10

      CaseNOTHPOs:

      CaseNOTHPOFreeText:

      CasePreviousTesting: NA

      GenotypingMethod: Sequencing of exon 28 of VWF

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.3922C>T (p.Arg1308Cys)

      HGVS: NM_000552.4(VWF):c.3922C>T (p.Arg1308Cys)

      ClinVarID: 289; https://www.ncbi.nlm.nih.gov/clinvar/variation/289/

      CAID: NA

      gnomAD: absent

    1. heterozygous small deletion (p.Leu 757ValfsX22) together with a large deletion of exons 48–52

      Case: IP-4

      DiseaseAssertion: VWD3

      FamilyInfo: NA

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: VWF:Ag 3%

      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: p.Leu757ValfsX22

      HGVS:

      ClinVarID:

      CAID:

      gnomAD:

      MultipleGeneVariants:

      GeneName: VWF

      Variant: deletion of exons 48-52

      ClinVarID or CAID:

      gnomAD:

    2. 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:

    3. 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:

    1. 1

      Case: 2A-9

      DiseaseAssertion: VWD2A

      FamilyInfo:

      ParentalGenotype(s):

      CasePresentingHPOs: AcuStar RCo/Ag = 0.32; AcuStar CB/Ag = 0.34; ELISA CB/Ag = 0.40

      CaseHPOFreeText:

      CaseNOTHPOs:

      CaseNOTHPOFreeText:

      CasePreviousTesting:

      GenotypingMethod: not described

      PreviouslyPublished: PMID:20351307

      Gene: VWF

      Variant: c.3296G>A (p.Cys1099Tyr)

      HGVS: NM_000552.5:c.3296G>A (p.Cys1099Tyr)

      ClinVarID: n/a

      CAID: CA383512195; https://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/by_caid?caid=CA383512195

      gnomAD: absent

    2. 1

      Case: 2A-8

      DiseaseAssertion: VWD2A

      FamilyInfo:

      ParentalGenotype(s):

      CasePresentingHPOs: AcuStar RCo/Ag = 0.43; AcuStar CB/Ag = 0.28; ELISA CB/Ag = 0.39

      CaseHPOFreeText:

      CaseNOTHPOs:

      CaseNOTHPOFreeText:

      CasePreviousTesting:

      GenotypingMethod: not described

      PreviouslyPublished: PMID:16985174

      Gene: VWF

      Variant: c.8313C>G (p.Cys2771Trp)

      HGVS: NM_000552.5:c.8313C>G (p.Cys2771Trp)

      ClinVarID: n/a

      CAID: CA383486665; https://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/by_caid?caid=CA383486665

      gnomAD: absent

    3. 0.39

      Case: 2A-4

      DiseaseAssertion: VWD2A

      FamilyInfo:

      ParentalGenotype(s):

      CasePresentingHPOs: AcuStar RCo/Ag = 0.39; AcuStar CB/Ag = 0.17; ELISA CB/Ag = 0.20

      CaseHPOFreeText:

      CaseNOTHPOs:

      CaseNOTHPOFreeText:

      CasePreviousTesting:

      GenotypingMethod: not described

      PreviouslyPublished: PMID: 1537829

      Gene: VWF

      Variant: c.4789C>T (p.Arg1597Trp)

      HGVS: NM_000552.5(VWF):c.4789C>T (p.Arg1597Trp)

      ClinVarID: 285; https://www.ncbi.nlm.nih.gov/clinvar/variation/285/?new_evidence=false

      CAID:

      gnomAD: absent

    1. Case: P9, Chinese, male, 11yo

      DiseaseAssertion: VWD1

      FamilyInfo: NA

      ParentalGenotype(s): NA

      CasePresentingHPOs: HP:0012147

      (Reduced quantity of VWF)

      CaseHPOFreeText: type A blood, bleeding score = 2; VWF:Ag (%) = 5.3, VWF:RCo (%) = 4.7, FVIII:C (%) = 10.7, VWF:CB (%) = 4.5, VWFpp (%) = 4.1, VWF:RCo/VWF:Ag = 0.9, VWF:CB/VWF:Ag = 0.9, VWFpp/VWF:Ag = 0.8, FVIII:C/VWF:Ag = 2.0, RIPA (1.2 mg/ml, %) = 51.0

      CaseNOTHPOs:

      CaseNOTHPOFreeText:

      CasePreviousTesting: NA

      GenotypingMethod: NGS

      PreviouslyPublished: NA

      Gene: VWF

      Variant 1: c.4414G>C (p.Asp1472His)

      HGVS: NM_000552.4(VWF):c.4414G>C (p.Asp1472His)

      ClinVarID: 256679; https://www.ncbi.nlm.nih.gov/clinvar/variation/256679/

      CAID: NA

      gnomAD: MAF = 0.5077 (12039/23712 alleles; 3078 homozygotes) in the African/African-American population; https://gnomad.broadinstitute.org/variant/12-6128170-C-G?dataset=gnomad_r2_1

      Variant 2: c.8079C>A (p.Cys2693Ter)

      HGVS: NM_000552.5:c.8079C>A (p.Cys2693Ter)

      ClinVarID: NA

      CAID: CA383487414; http://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/by_caid?caid=CA383487414

      gnomAD: absent

    2. Case: P78, Chinese, female, 23yo

      DiseaseAssertion: VWD3

      FamilyInfo: NA

      ParentalGenotype(s): NA

      CasePresentingHPOs: HP:0012147

      (Reduced quantity of VWF)

      CaseHPOFreeText: type O blood, bleeding score = 13; VWF:Ag (%) = <0.3, VWF:RCo (%) = <0.5, FVIII:C (%) = 4.3, VWF:CB (%) = <0.5, VWFpp (%) = <0.5, VWF:RCo/VWF:Ag = NA, VWF:CB/VWF:Ag = NA, VWFpp/VWF:Ag = NA, FVIII:C/VWF:Ag = NA

      CaseNOTHPOs:

      CaseNOTHPOFreeText:

      CasePreviousTesting: NA

      GenotypingMethod: NGS

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.5183_5186del - unregistered variant

      HGVS: NA

      ClinVarID: NA

      CAID: NA

      gnomAD: NA

    3. Case: P75, Chinese, female, 25yo

      DiseaseAssertion: VWD1

      FamilyInfo: NA

      ParentalGenotype(s): NA

      CasePresentingHPOs: HP:0012147

      (Reduced quantity of VWF)

      CaseHPOFreeText: type O blood, bleeding score = 2; VWF:Ag (%) = 53.6, VWF:RCo (%) = 55.9, FVIII:C (%) = 74.0, VWF:CB (%) = 53.8, VWFpp (%) = 57.7, VWF:RCo/VWF:Ag = 1.0, VWF:CB/VWF:Ag = 1.0, VWFpp/VWF:Ag = 1.1, FVIII:C/VWF:Ag = 1.4

      CaseNOTHPOs:

      CaseNOTHPOFreeText:

      CasePreviousTesting: NA

      GenotypingMethod: NGS

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.6104G>A (p.Gly2035Asp)

      HGVS: NM_000552.3:c.6104G>A (p.Gly2035Asp)

      ClinVarID: NA

      CAID: CA6402069; http://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/by_caid?caid=CA6402069

      gnomAD: MAF = 0.005613 (112/19954 alleles; 2 homozygotes) in the East Asian population; https://gnomad.broadinstitute.org/variant/12-6103733-C-T

    4. Case: P24, Chinese, male, 6yo

      DiseaseAssertion: VWD3

      FamilyInfo: NA

      ParentalGenotype(s): NA

      CasePresentingHPOs: HP:0012147

      (Reduced quantity of VWF)

      CaseHPOFreeText: type A blood, bleeding score = 13; VWF:Ag (%) = 0.9, VWF:RCo (%) = 0.7, FVIII:C (%) = 5.0, VWF:CB (%) = 0.7, VWFpp (%) = 0.9, VWF:RCo/VWF:Ag = 0.8, VWF:CB/VWF:Ag = 0.8, VWFpp/VWF:Ag = 1.0, FVIII:C/VWF:Ag = 5.6

      CaseNOTHPOs:

      CaseNOTHPOFreeText:

      CasePreviousTesting: NA

      GenotypingMethod: NGS

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.478G>C (p.Gly160Arg)

      HGVS: NM_000552.5:c.478G>C (p.Gly160Arg)

      ClinVarID: NA

      CAID: CA383518174; http://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/by_caid?caid=CA383518174

      gnomAD: absent

    5. Case: P59, Chinese, female, 7yo

      DiseaseAssertion: VWD3

      FamilyInfo: NA

      ParentalGenotype(s): NA

      CasePresentingHPOs: HP:0012147

      (Reduced quantity of VWF)

      CaseHPOFreeText: type O blood, bleeding score = 7; VWF:Ag (%) = 1.4, VWF:RCo (%) = 1.0, FVIII:C (%) = 3.9, VWF:CB (%) = 1.3, VWFpp (%) = 1.2, VWF:RCo/VWF:Ag = 0.7, VWF:CB/VWF:Ag = 0.9, VWFpp/VWF:Ag = 0.9, FVIII:C/VWF:Ag = 2.8

      CaseNOTHPOs:

      CaseNOTHPOFreeText:

      CasePreviousTesting: NA

      GenotypingMethod: NGS

      PreviouslyPublished: NA

      Gene: VWF

      Variant 1: c.2964C>A (p.Tyr988Ter)

      HGVS: NM_000552.5:c.2964C>A (p.Tyr988Ter)

      ClinVarID: NA

      CAID: CA383516120; http://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/by_caid?caid=CA383516120

      gnomAD: absent

      Variant 2: c.6540T>G (p.Tyr2180Ter)

      HGVS: NM_000552.5:c.6540T>G (p.Tyr2180Ter)

      ClinVarID: NA

      CAID: CA383490834; http://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/by_caid?caid=CA383490834

      gnomAD: absent

    6. Case: P30, Chinese, female, 16yo

      DiseaseAssertion: VWD3

      FamilyInfo: NA

      ParentalGenotype(s): NA

      CasePresentingHPOs: HP:0012147

      (Reduced quantity of VWF)

      CaseHPOFreeText: type O blood, bleeding score = 21; VWF:Ag (%) = 0.5, VWF:RCo (%) = <0.5, FVIII:C (%) = 2.0, VWF:CB (%) = 0.6, VWFpp (%) = <0.5`, VWF:RCo/VWF:Ag = NA, VWF:CB/VWF:Ag = 1.2, VWFpp/VWF:Ag = NA, FVIII:C/VWF:Ag = 4.0

      CaseNOTHPOs:

      CaseNOTHPOFreeText:

      CasePreviousTesting: NA

      GenotypingMethod: NGS

      PreviouslyPublished: NA

      Gene: VWF

      Variant: Exons 6–16 del - unregistered variant

      HGVS: NA

      ClinVarID: NA

      CAID: NA

      gnomAD: NA

    7. Case: P89, Chinese, female, 51yo

      DiseaseAssertion: VWD2N

      FamilyInfo: NA

      ParentalGenotype(s): NA

      CasePresentingHPOs: HP:0012147

      (Reduced quantity of VWF)

      CaseHPOFreeText: type O blood, bleeding score = 7; VWF:Ag (%) = 125.8, VWF:RCo (%) = 119.6, FVIII:C (%) = 9.8, VWF:CB (%) = 127.8, VWFpp (%) = 109.8, VWF:RCo/VWF:Ag = 1.0, VWF:CB/VWF:Ag = 1.0, VWFpp/VWF:Ag = 0.9, FVIII:C/VWF:Ag = 0.1, VWF: FVIIIB (%) = 0.1

      CaseNOTHPOs:

      CaseNOTHPOFreeText:

      CasePreviousTesting: NA

      GenotypingMethod: NGS

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.2446C>T (p.Arg816Trp)

      HGVS: NM_000552.4(VWF):c.2446C>T (p.Arg816Trp)

      ClinVarID: 295; https://www.ncbi.nlm.nih.gov/clinvar/variation/295/

      CAID: NA

      gnomAD: MAF = 0.0002541 (9/35418 alleles) in the Latino/Admixed American population; https://gnomad.broadinstitute.org/variant/12-6145654-G-A?dataset=gnomad_r2_1

    8. Case: P28, Chinese, male, 15yo

      DiseaseAssertion: VWD2B

      FamilyInfo: NA

      ParentalGenotype(s): NA

      CasePresentingHPOs: HP:0012147

      (Reduced quantity of VWF)

      CaseHPOFreeText: type A blood, bleeding score = 4; VWF:Ag (%) = 17.7, VWF:RCo (%) = 4.9, FVIII:C (%) = 25.5, VWF:CB (%) = 5.1, VWFpp (%) = 45.3, VWF:RCo/VWF:Ag = 0.3, VWF:CB/VWF:Ag = 0.3, VWFpp/VWF:Ag = 2.6, FVIII:C/VWF:Ag = 1.4, RIPA (0.5 mg/ml, %) = 20.5, PLT(×109/l) = 112

      CaseNOTHPOs:

      CaseNOTHPOFreeText:

      CasePreviousTesting: NA

      GenotypingMethod: NGS

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.3922C>T (p.Arg1308Cys)

      HGVS: NM_000552.4(VWF):c.3922C>T (p.Arg1308Cys)

      ClinVarID: 289; https://www.ncbi.nlm.nih.gov/clinvar/variation/289/

      CAID: NA

      gnomAD: absent

    9. Case: P47, Chinese, female, 23yo

      DiseaseAssertion: VWD1

      FamilyInfo: NA

      ParentalGenotype(s): NA

      CasePresentingHPOs: HP:0012147

      (Reduced quantity of VWF)

      CaseHPOFreeText: type O blood, bleeding score = 12; VWF:Ag (%) = 4.5, VWF:RCo (%) = 3.3, FVIII:C (%) = 36.5, VWF:CB (%) = 4.2, VWFpp (%) = 5.3, VWF:RCo/VWF:Ag = 0.7, VWF:CB/VWF:Ag = 0.9, VWFpp/VWF:Ag = 1.2, FVIII:C/VWF:Ag = 8.1, RIPA (1.2 mg/ml, %) = 55.9

      CaseNOTHPOs:

      CaseNOTHPOFreeText:

      CasePreviousTesting: NA

      GenotypingMethod: NGS

      PreviouslyPublished: NA

      Gene: VWF

      Variant 1: c.100C>T (p.Arg34Ter)

      HGVS: NM_000552.4(VWF):c.100C>T (p.Arg34Ter)

      ClinVarID: 100171; https://www.ncbi.nlm.nih.gov/clinvar/variation/100171/

      CAID: NA

      gnomAD: MAF = 0.00002645 (3/113436 alleles) in the European (non-Finnish) population; https://gnomad.broadinstitute.org/variant/12-6230460-G-A?dataset=gnomad_r2_1

      Variant 2: c.6860G>A (p.Arg2287Gln)

      HGVS: NM_000552.3:c.6860G>A (p.Arg2287Gln)

      ClinVarID: NA

      CAID: CA6401877; http://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/by_caid?caid=CA6401877

      gnomAD: MAF = 0.005415 (108/19946 alleles) in the East Asian population; https://gnomad.broadinstitute.org/variant/12-6094770-C-T

    10. Case: P8, Chinese, male 3yo

      DiseaseAssertion: VWD3

      FamilyInfo: NA

      ParentalGenotype(s): NA

      CasePresentingHPOs: HP:0012147

      (Reduced quantity of VWF)

      CaseHPOFreeText: type A blood, bleeding score = 5; VWF:Ag (%) = 2.1, VWF:RCo (%) = 1.7, FVIII:C (%) = 4.8, VWF:CB (%) = 1.5, VWFpp (%) = 2.3, VWF:RCo/VWF:Ag = 0.8, VWF:CB/VWF:Ag = 0.7, VWFpp/VWF:Ag = 1.1, FVIII:C/VWF:Ag = 2.3

      CaseNOTHPOs:

      CaseNOTHPOFreeText:

      CasePreviousTesting: NA

      GenotypingMethod: NGS

      PreviouslyPublished: NA

      Gene: VWF

      Variant 1: c.1025_1032dup - unregistered variant

      HGVS: NA

      ClinVarID: NA

      CAID: NA

      gnomAD: NA

      Variant 2: c.7969C>T (p.Gln2657Ter)

      HGVS: NM_000552.5:c.7969C>T (p.Gln2657Ter)

      ClinVarID: NA

      CAID: CA383487678; http://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/by_caid?caid=CA383487678

      gnomAD: NA

    11. Case: P81, Chinese, female, 30yo

      DiseaseAssertion: VWD1

      FamilyInfo: NA

      ParentalGenotype(s): NA

      CasePresentingHPOs: HP:0012147

      (Reduced quantity of VWF)

      CaseHPOFreeText: type A blood, bleeding score = 7; VWF:Ag (%) = 5.0, VWF:RCo (%) = 5.3, FVIII:C (%) = 6.1, VWF:CB (%) = 6.8, VWFpp (%) = 46.0, VWF:RCo/VWF:Ag = 1.1, VWF:CB/VWF:Ag = 1.4, VWFpp/VWF:Ag = 9.2, FVIII:C/VWF:Ag = 1.2, RIPA (1.2 mg/ml, %) = 85.4

      CaseNOTHPOs:

      CaseNOTHPOFreeText:

      CasePreviousTesting: NA

      GenotypingMethod: NGS

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.3614G>A (p.Arg1205His)

      HGVS: NM_000552.4(VWF):c.3614G>A (p.Arg1205His)

      ClinVarID: 308; https://www.ncbi.nlm.nih.gov/clinvar/variation/308/

      CAID: NA

      gnomAD: absent

    1. His 30‐year‐old mother had epistaxis, easy bruising, gum bleeding, and abnormal menstrual score according to the Pictorial Bleeding Assessment Chart4 (PBAC = 192, nv < 185).

      Case#: 2, Female, Age 30, blood type B, Mother of Proband

      Disease Assertion: VWD1

      FamilyInfo: Mother of proband, No family history

      Parental Genotype: not listed

      CasePresentingHPOs: HP:0000421, HP:0000978, HP:0000225

      (Epistaxis, Bruising susceptibility, Gingival bleeding)

      CaseHPOFreeText: abnormal menstrual score (PBAC= 192, nv<185), VWF:Ag: 45, VWF:RCo: 46, bleeding score 5

      CaseNotHPOs:

      CaseNotHPOFreeText:

      Protein Expression:

      CasePreviousTesting: Forward and reverse strands sequenced by automated sequencing technology, PCR techniques used to analyze exons 17, 26-31, and 52 of VWF gene

      Gene: VWF

      Variant:NM_000552.3:c.4276C>T (p.Arg1426Cys)

      ClinVar:. N/A

      CAID: CA6402561 CA6402561

      gnomAD: MAF of 0.00006152 (1/16254 alleles) in the African population for CA6402561.

      gnomAD website1

    1. T3-1

      Case: T3-1, female, 21yo

      DiseaseAssertion: VWD3

      FamilyInfo:

      ParentalGenotype(s):

      CasePresentingHPOs:

      CaseHPOFreeText: Blood type: O+, bleeding score = 24, VWF:Ag (IU/mL) = 0.01; VWF:RCo (IU/mL) = 0.00; FVIII:C (IU/mL) = 0.01

      CaseNOTHPOs:

      CaseNOTHPOFreeText:

      CasePreviousTesting:

      GenotypingMethod: qRT-PCR

      PreviouslyPublished:

      Gene: VWF

      Variant 1: c.876delC (p.Pro293Glnfs*164)

      HGVS: n/a

      ClinVarID: n/a

      CAID: n/a

      gnomAD: n/a

      Variant 2: c.1255C>T (p.Gln419Ter)

      HGVS: NM_000552.5:c.1255C>T (p.Gln419Ter)

      ClinVarID: n/a

      CAID: CA232314778; https://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/by_caid?caid=CA232314778

      gnomAD: absent

    2. T3-4

      Case: T3-4, male, 16yo

      DiseaseAssertion: VWD3

      FamilyInfo:

      ParentalGenotype(s):

      CasePresentingHPOs:

      CaseHPOFreeText: Blood type: A+, bleeding score = 24, VWF:Ag (IU/mL) = 0.01; VWF:RCo (IU/mL) = 0.03; FVIII:C (IU/mL) = 0.01

      CaseNOTHPOs:

      CaseNOTHPOFreeText:

      CasePreviousTesting:

      GenotypingMethod: qRT-PCR

      PreviouslyPublished:

      Gene: VWF

      Variant 1: c.1657dupT (p.Trp553Leufs*97)

      HGVS: n/a

      ClinVarID: n/a

      CAID: n/a

      gnomAD: n/a

      Variant 2: c.8419_8422dupTCCC (p.Pro2808Leufs*24)

      HGVS: n/a

      ClinVarID: n/a

      CAID: n/a

      gnomAD: n/a

    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. P4F/641Yes11384023260.9NormalNT270

      Case: P4 Female, Korean, 64 years at report

      DiseaseAssertion: VWD1

      FamilyInfo: Positive family history, no details provided.

      ParentalGenotype: NA

      CasePresentingHPOs: HP:0030129, HP:0012147, HP:0030132, HP:0011871

      (Impaired ristocetin cofactor assay activity, Reduced quantity of VWF, Absence of large von Willebrand factor multimers, Impaired RIPA)

      CaseHPOFreeText: bleeding score 11, FVII:C 40%, VWF:Rco 23 IU/dL, VWF:Ag 26 IU/Dl, VWF:Rco/VWF:Ag 0.9, RIPA NT

      CaseNotHPOs: HP:0003645, HP:0001873

      (Prolonged partial thromboplastin time, Thrombocytopenia)

      CaseNotHPOFreeText: aPTT 36s, platelets 270x10^9/L

      CasePreviousTesting: NA

      GenotypingMethod: Direct sequencing of all exons, flanking intronic sequences, and the promoter of VWF was performed.

      Gene: VWF

      Variant: c.3389G>A p.C1130Y

      HGVS: NM_000552.4:c.2574C>G (p.Cys858Trp)

      ClinVar: NA

      CAID: CA232299278

      gnomAD: MAF of 0.0001002 (2/19954 alleles) in the East Asian population

      https://gnomad.broadinstitute.org/variant/12-6143965-G-C

    1. An infant with presumed maternal immune thrombocytopenic purpura had persistent thrombocytopenia with platelet clumping. The patient had no significant bleeding symptoms in the first year of life and von Willebrand antigen and ristocetin cofactor activity were normal. Absent high molecular weight multimers ultimately led to a genetically proven diagnosis of type 2B von Willebrand disease (3964G>A VWF exon 28), highlighting the challenges of establishing this diagnosis in infants.

      Case: Rotz Proband, female, reported at birth

      DiseaseAssertion: VWD2b

      FamilyInfo: Mother was 30yo reported with new onset thrombocytopenia during labor, diagnosed with maternal ITP; mother also had history of menorrhagia and excessive bleeding with minor trauma; VWF profile revealed a Factor VIII activity=49 IU/dL, VWF antigen=32 IU/dL, and undetectable RCo

      ParentalGenotype(s): mother also carried c.3964G>A unregistered variant

      CasePresentingHPOs: HP:0001873, HP:0030132, HP:0000967, HP:0000421, HP:0001892, HP:0001903, HP:0001981

      (thrombocytopenia, Absence of large von Willebrand factor multimers, Petechiae, epistaxis, abnormal bleeding, anemia, schistocyte)

      CaseHPOFreeText: small hematoma at IV puncture site, platelet count was 9×109/L, ultrasound showed no hemorrhage, hemoglobin=7.6 g/dL

      CaseNOTHPOs: HP:0012147, HP:0030129

      (Reduced quantity of VWF, impaired ristocetin cofactor assay activity)

      CaseNOTHPOFreeText: no unusual findings on physical exam

      CasePreviousTesting: NA

      GenotypingMethod: Sequencing of VWF exon 28

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.3964G>A unregistered variant

      HGVS: NA

      ClinVarID: NA

      CAID: NA

      gnomAD: NA

    1. 051

      Case: Patient ID 051 (green color code), 11 year old Black female, not Hispanic

      DiseaseAssertion: Type 3 Von Willebrand Disease

      CasePresentingHPOs: HP:6000676

      (Anti-von Willebrand factor antibody positivity)

      CaseHPOFreeRext: ISTH-BAT bleeding score of 32

      CaseNOTHPOs:

      CaseNOTHPOFreeText:

      CasePreviousTesting: N/A

      GenotypingMethod: Full-length VWF exonic Sanger sequencing and array comparative genomic hybridization to detect deletions or duplications

      Gene: VWD

      HGVS: NM_000552.5

      Variant1: p.Trp1144*

      ClinVarID / CAID: None

      Variant2: p.Leu1281Cysfs*16

      CAID: CA2575053893

      gnomAD: MAF of 1.695E-6 in European (non-Finnish), no homozygotes noted; gnomAD Page

    1. P9

      Case: P9, female, 28yo

      DiseaseAssertion: VWD2M

      FamilyInfo: NA

      ParentalGenotype(s): NA

      CasePresentingHPOs: HP:0012147, HP:0030129, HP:0030130

      (Reduced quantity of VWF, Impaired ristocetin cofactor assay activity, Impaired von Willebrand factor collagen binding activity)

      CaseHPOFreeText: bleeding score = 7; VWF:Ag (%) = 35, VWF:RCo(%) = 24, VWF:RCo/VWF:Ag ratio = 0.69, VWF:CIIIB (%) = 11, VWF:CIIIB/VWF:Ag ratio = 0.31, VWF:CVIB (%) = 19.2, VWF:CVIB/VWF:Ag ratio = 0.54

      CaseNOTHPOs: HP:0030132

      (Absence of large von Willebrand factor multimers)

      CaseNOTHPOFreeText: NA

      CasePreviousTesting: NA

      GenotypingMethod: NGS

      PreviouslyPublished: NA

      Gene: VWF

      Variant: c.5140G>C (p.Ala1714Pro)

      HGVS: NM_000552.3:c.5140G>C (p.Ala1714Pro)

      ClinVarID: NA

      CAID: CA383496428; http://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/by_caid?caid=CA383496428

      gnomAD: absent

    1. We were able to further investigate platelets and/or BOECs in one family with the Pro2808Leufs*24 variant. The pedigree and laboratory data is shown in Fig. 1. The IC, T105, is homozygous for Pro2808Leufs*24. One of her siblings heterozygous for the variant was also enrolled (T107).

      Case: IC-T105, Canadian, female

      DiseaseAssertion: VWD3

      FamilyInfo: Pedigree in Fig 1A, 4 homozygotes, 3 heterozygotes

      ParentalGenotype(s): not reported

      CasePresentingHPOs:

      CaseHPOFreeText: VWF:Ag = 0.02 IU/mL, VWF:RCo = 0.00 IU/mL, FVIII:C = 0.03, bleeding score = 18

      CaseNOTHPOs:

      CaseNOTHPOFreeText:

      CasePreviousTesting: NA

      GenotypingMethod: sequencing of VWF gene

      PreviouslyPublished: PMID:23311757

      Gene: VWF

      Variant: c.8419_8422dup (p.Pro2808Lysfs*24) - Unregistered Variant

      HGVS: NA

      ClinVarID: NA

      CAID: NA

      gnomAD: NA

    1. Case: Case Report, female, 63yo

      DiseaseAssertion: VWD2B

      FamilyInfo: sister exhibited thrombocytopenia and mother had suffered from acute subdural hematoma in the context of chronic thrombocytopenia

      ParentalGenotype(s): NA

      CasePresentingHPOs: HP:0002138, HP:0011854, HP:0001873, HP:0032044, HP:0030132

      (Subarachnoid hemorrhage, Hemoperitoneum, thrombocytopenia, Decreased vigilance, Absence of large von Willebrand factor multimers)

      CaseHPOFreeText: thrombocytopenia with pregnancy, platelet count fluctuated between 3 and 200 G/l, subarachnoid hemorrhage associated with a subdural hematoma after falling, hemostasis results were normal, meningeal hemorrhage, cephalalgia; FVIII:C: 1.63 IU/ml; VWF:RCo: 0.7 IU/ml; VWF:Ag: 1.8 IU/ml, ratio VWF:Rco/VWF/Ag: 0.39; Ristocetin-induced platelet agglutination could not be performed due to the severe thrombocytopenia

      CaseNOTHPOs: NA

      CaseNOTHPOFreeText: NA

      CasePreviousTesting: tests for autoimmune disease negative

      GenotypingMethod: NGS of exon 28 of VWF gene; variant confirmed via Sanger sequencing

      PreviouslyPublished: NA

      Gene: VWF

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

      HGVS: NM_000552.4(VWF):c.3946G>A (p.Val1316Met)

      ClinVarID: 290; https://www.ncbi.nlm.nih.gov/clinvar/variation/290/

      CAID:

      gnomAD: absent

    1. 5

      Case#: 5, male, 65yo

      DiseaseAssertion: VWD1

      FamilyInfo: grandson diagnosed with VWD

      ParentalGenotype: N/A

      CasePresentingHPOs: HP:0000978, HP:0004846, HP:0012147, HP:0030129, HP:0030130 (Bruising susceptibility, Reduced quantity of VWF, Impaired ristocetin cofactor assay activity, Impaired von Willebrand factor collagen binding activity)

      CaseHPOFreeText: Bleeding after oral surgery, ESRD awaiting renal transplantation, Type A blood, VWF:Ag (0·55–2 iu/ml) pre = 0·41, VWF:RCo (0·55–2 iu/ml) pre = 0·29, FVIII:C (0·55–2 iu/ml) pre = 0·31, FVIII:C/VWF:Ag ratio = 0·75, VWF:FVIII binding (>20%) = 12%, VWF:FVIII binding/VWF:Ag (>0·7) = 0·29, Uncomplicated kidney transplant with VWF concentrate replacement

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      ProteinExpression: N/A

      CasePreviousTesting: RFLP; confirmatory sequencing

      Gene: VWF

      Variant 1: NM_000552.4(VWF):c.2561G>A (p.Arg854Gln)

      ClinVar: 296; https://www.ncbi.nlm.nih.gov/clinvar/variation/296/

      gnomAD: MAF = 0.005692 (European Non-Finnish); https://gnomad.broadinstitute.org/variant/12-6143978-C-T

      Variant 2: N/A - stated to be a compound heterozygote for a 2N VWD and a presumed null mutation

    1. 12-year-old girl

      Case#: 12 yr, female,

      DiseaseAssertion: HCM

      FamilyInfo: Father and younger brother also diagnosed, same mutation, brother asymptomatic,

      CasePresentingHPOs: Syncope, Left bundle branch block, third degree atrioventricular block, amaurosis fugax, vertigo, ventricular septal hypertrophy, mitral regurgitation (HP:0001279, HP:0011713, HP:0001709, HP:0100576, HP:0002321, HP:0005144, HP:0001653)

      CaseHPOFreeText: bilateral atrial enlargement to 44mm for left and 40 mm for right, interventricular septum thickened to 23mm, posterior left ventricle thickened to 10 mm, left ventricular ejection fraction of 51.8%, elevated plasma level B-type Natriuretic peptic 1165 pg/ml

      CaseNotHPOs: heart murmur (HP:0030148)

      CaseNotHPOFreeText: normal liver and spleen size, no edema, pericardial abnormality, no obstruction of left ventricular outflow tract, normal pasma amino acids and urine organic acids

      CasePreviousTesting: whole exome sequencing

      CaseGenotypingMethod: heart rate of 102/min; respiratory rate of 25/min; blood pressure of 127/74 mmHg; ECG; 175 QRS complex; Holter monitor; MRI; Etiologic investigations; Bioinformatic analysis based on Polymorphism Phenotyping v2, Sorting Intolerant From Tolerant;

      Variant: NM_000257.4(MYH7):c.2155C>T (p.Arg719Trp)

      ClinVar: 14104 https://www.ncbi.nlm.nih.gov/clinvar/variation/14104/

      CAID: N/A

      gnomAD: 0.00006481 https://gnomad.broadinstitute.org/variant/14-23895180-G-A

    1. Supplementary Data: Online Table 3

      Case:

      CasePreviousTesting: Full sarcomere testing (MYBPC3, TNNT2, TNNI3, MYL2, MYL3, TPM1, ACTC1), Additional testing (ABCC9, ACTN2, ANKRD1, BAG3, CALR3, CRYAB, CSRP3, DES, DMD, DSC2, DSG2, DSP, EMD, GLA, JPH2, JUP, LAMA4, LAMP2, LMNA, MYH6, MYPN, MYOZ1, MYOZ2, PKP2, PLN, PRKAG2, RBM20, RYR2, SCN5A, SGCD, TAZ, TCAP, TMEM43, TNNC1, TTN, VCL and LDB3)

      CaseGenotypingMethod: DNA isolated from peripheral blood, targeted enrichment, next-gen sequencing with panel of 46 genes

      Variant: NM_000257.3:c.2453T>A

      CAID: CA389048376, http://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/by_caid?caid=CA389048376

      gnomAD: n/a

    1. Family 1 reported by Postma et al. [2011]. The MYH7 mutation Tyr283Asp is segregating with LVNC, Ebstein anomaly and other congenital heart disease (CHD).

      CaseIII-3: female

      DiseaseAssertion: LVNC, Ebstin anomaly, congenital heart disease

      FamilyInfo: all mutation carriers have LVNC, with some having Ebstein anomaly and/or other CHD

      CasePresentingHPOs:

      CaseHPOFreeText:

      CaseNotHPOs:

      CaseNotHPOFreeText:

      CasePreviousTesting:

      GenotypingMethod:

      Variant: NM_000257.4:c.847T>G

      ClinVar: 66081

      CAID: CA016893

      gnomAD:

    1. Case 1

      Case1: 17 month onset

      DiseaseAssertion: Noncompaction of the ventricular myocardium

      FamilyInfo: No known family history of heart disease or sudden cardiac death, Has two sisters with the same MYH7 variant and similar phenotypes, See Fig 3 for pedigree

      CasePresentingHPOs: HP:0001279, HP:0001635, HP:0012818, HP:0031295, HP:0030718, HP:0005133, HP:0005180, HP:0001653, HP:0001723, HP:0002092, HP:0004890, HP:0030876, HP:0005168 (Syncope, Heart failure, Biventricular noncompaction cardiomyopathy, Left atrial enlargement, Right atrial enlargement, Right ventricular dilation, Tricuspid regurgitation, Mitral regurgitation, Restrictive cardiomyopathy, Pulmonary arterial hypertension, Elevated pulmonary artery pressure, Increased pulmonary capillary wedge pressure, Elevated right atrial pressure)

      HPOsFreeText: Both cardiac ventricles had a coarsely trabeculated and spongy appearance in posterior wall, lateral wall, apical segments, and right ventricle, LVEF at 51%, Short E-wave deceleration time at the transmitral level (85 msec) with a high E/A ratio (2.1), Ratio between the thickness of the noncompacted layer and the myocardial layer was 3.4:1, Underwent cardiac catheterization, Left ventricular systolic pressure and end-diastolic pressure were 95 mmHg and 37 mmHg respectively, Pulmonary vascular resistance was 4.0 Wood Unit m^2

      CaseNotHPOs: N/A

      NotHPOsFreeText: Normal left ventricle end-diastolic volume (110%), No other congenital heart disease

      CaseAddInfo: Died at age 2 yrs of advanced heart failure

      CasePreviousTesting: TruSight One sequencing panel was used for testing (Illumina)

      CaseGenotypingMethod: Blood samples were collected from the proband and his siblings and genomic DNA was extracted. Target enrichment was performed using the TruSight One sequencing panel (Illumina). Analysis was annotated and filtered, after which the MYH7 pathogenic variant was confirmed using PCR and Sanger sequencing.

      Variant: NM_000257.4(MYH7):c.5740G>A (p.Glu1914Lys)

      ClinVar: 43088 https://www.ncbi.nlm.nih.gov/clinvar/variation/43088/

      gnomAD: Not in gnomAD

      MultipleGeneVariants

      (1) PLEC Variant

      Variant: NM_000445.4:c.3005-8T>C

      CAID: CA187619061 http://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/by_caid?caid=CA187619061

      gnomAD: Not in gnomAD

    1. Supplementary Material 4

      Case M-28: Japanese

      DiseaseAssertion: idiopathic cardiomyopathy (HCM and DCM)

      CasePreviousTesting: Clinical evaluation, chest radiography, electrocardiography, echocardiography, cardiac catheterization, full testing (MYBPC3, TNNT2, TNNI3, MYL2, MYL3, TPM1, ACTC1)

      CaseGenotypingMethod: 8 sarcomeric genes amplified from genomic DNA via PCR then screened using bidirectional direct sequencing

      Variant: NM_000257.3(MYH7):c.2770G>A (p.Glu924Lys)

      ClinVar: 14092, https://www.ncbi.nlm.nih.gov/clinvar/variation/14092/

      gnomAD: n/a

    1. 45 yr old femaleproband

      Case#: 45 yr, female, diagnosed at 13 from heart murmur

      DiseaseAssertion: HCM

      FamilyInfo: sibling with HCM, family history of symptoms and same mutation

      CasePresentingHPOs: left ventricular hypertrophy (HP:0001712)

      CaseHPOFreeText: abnormal coaptation of the mitral valve, systolic anterior motion of the mitral valve,

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      CaseGenotypingMethod: stem cell derivation and cardiomyocyte differentiation; hiPSC-cardiomyocyte shRNA silencing experiments; qPCR analysis of MYH7 alleles; ECG; Micropatterning; ASO silencing

      Variant: NM_000257.4(MYH7):c.1208G>A (p.Arg403Gln)

      ClinVar: 14087 https://www.ncbi.nlm.nih.gov/clinvar/variation/14087/

      CAID: N/A

      gnomAD: absent

    1. proband carrying double mutations (MYH7 R858C and TNNT2 R286H)

      CaseR858C: 44 year old (text states male, pedigree states female)

      DiseaseAssertion: HCM

      FamilyInfo: No family members manifested sudden death, lethal arrhythmia, LVOT obstruction, or severe heart failure.

      One family member also carried double mutations

      CaseHPOFreeText: greater LV hypertrophy than his family members who carried a single mutation

      CasePreviousTesting: systematic mutation screening of eight sarcomeric genes: (MYH7), (MYBPC3), (TNNT2), (TNNI3), (MYL2), (MYL3), (TPM1), and (ACTC), using direct DNA sequencing

      GenotypingMethod: Genomic DNA was isolated from the leukocytes of the peripheral blood. Polymerase chain reaction was used to amplify the exons and flanking intronic bases of the eight genes, including MYH7, MYBPC3, TNNT2, TNNI3, MYL2, and MYL3. When no mutation was found, analysis of the TPM1 and ACTC genes was performed

      MultipleGeneVariants:

      VariantMYH7: NM_000257.4:c.2572C>T

      ClinVar: 164324

      CAID: CA012656

      gnomAD: https://gnomad.broadinstitute.org/variant/14-23894085-G-A

      0.00006152 African

      VariantTNNT2: NM_001001430.3:c.857G>A

      ClinVar: 43677

      CAID: CA005304

      gnomAD: https://gnomad.broadinstitute.org/variant/1-201328348-C-T

      0.0008699 East Asian

    1. Patient #1: family history of a severe HCM patient carrying both thin (S215L in TPM1) and thick (D896N and E525K in MYH7) filament mutations

      CaseIII:2: 44 year old male, South Asian

      DiseaseAssertion: HCM, septal hypertrophic obstructive cardiomyopathy

      FamilyInfo: family history of two sudden cardiac deaths at ages 35 and 19, and three family members with septal hypertrophic obstructive cardiomyopathy

      CasePresentingHPOs: HP:0001279, HP:0002094, HP:0001962

      "Syncope, Dyspnea, Palpitations"

      CasePreviousTesting: screened sarcomeric thin filament protein gene, α-tropomyosin (TPM1), screening of seven other sarcomeric genes: MYH7, MYBPC3, TNNT2, TNNI3, MYL2, MYL3, and ACTC

      GenotypingMethod: sequences covering all the exons and exon–intron boundaries of TPM1 and seven other sarcomeric genes (MYH7, MYBPC3, TNNT2, TTN, TNNI3, MYL2, MYL3, and ACTC) were synthesized

      MultipleGeneVariants:

      VariantMYH7: NM_000257.4:c.2686G>A

      ClinVar: 132908

      CAID: CA012857

      gnomAD: not found

      VariantMYH7: NP_000248.2:p.Ile524Lys

      ClinVar: not found

      CAID: valid allele but not present in the registry

      gnomAD: not found

      VariantTPM1: NM_000366.6:c.644C>T

      ClinVar: 31883

      CAID: CA018243

      gnomAD: https://gnomad.broadinstitute.org/variant/15-63354418-C-T

      0.000008806 European (non-Finnish)

    1. The proband (II-9)

      CaseII-9: Male, 38 years diagnosis, China, Asian

      DiseaseAssertion: Hypertrophic cardiomyopathy

      FamilyInfo: Proband's father (I-1) and mother (I-2) had histories of mild episodes of dizziness, no other symptoms reported in the other family members

      CasePresentingHPOs: HP:0001279, HP:0001712, HP:0001639 (Syncope, Left ventricular hypertrophy, Hypertrophic cardiomyopathy)

      HPOsFreeText: Heart rate 62 bpm, PR interval 172 ms, QRS complex duration 88 ms, Diffuse repolarization changes with a late-onset inverted T-wave pattern, LVMI 109.55 g/m2, MLVWT 24 mm, Ejection Fraction 70%

      CaseNotHPOs: HP:0030148 (Heart murmur)

      NotHPOsFreeText: N/A

      CaseAddInfo: N/A

      CasePreviousTesting: See Table 1

      CaseGenotypingMethod: Genomic DNA was extracted from blood and amplified. It was then subjected to a sequencing panel with an Illumina sequencer based on the 96 genes related to cardiac function. All readings were aligned, with any variants confirmed by Sanger sequencing and filtered for pathogenicity.

      Variant: NM_000257.3:c.5151T>A (p.His1717Gln)

      CAID: CA389036862 https://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/allele?hgvs=NM_000257.3%3Ac.5151T%3EA

      gnomAD: Not in gnomAD

      Multiple Gene Variants:

      KCNQ1 Variant

      Variant: NM_000218.2:c.568C>T (p.Arg190Trp)

      ClinVar: 53070 https://www.ncbi.nlm.nih.gov/clinvar/variation/53070/

      gnomAD: Latino 2.896e-5, Overall 4.011e-6 https://gnomad.broadinstitute.org/variant/11-2591948-C-T

      MYLK2 Variant

      Variant: NM_033118.3:c.970A>G (p.Lys324Glu)

      ClinVar: CA408526793 https://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/allele?hgvs=NM_033118.3%3Ac.970A%3EG

      gnomAD: African 6.453e-5, Overall 4.087e-6 https://gnomad.broadinstitute.org/variant/20-30412153-A-G

      TMEM70 Variant

      Variant: NM_017866.5:c.440T>C (p.Ile147Thr)

      ClinVar: 571761 https://www.ncbi.nlm.nih.gov/clinvar/variation/571761/

      gnomAD: East Asian 4.893e-4, Overall 3.579e-5 https://gnomad.broadinstitute.org/variant/8-74893513-T-C

    1. HCM006

      CaseHCM006: 15 yrs report, Vietnam, Asian

      DiseaseAssertion: Hypertrophic Cardiomyopathy

      FamilyInfo: Family history of sudden cardiac death

      CasePresentingHPOs: HP:0002875, HP:0001712, HP:0031295, HP:0011103, HP:0001653 (Exertional dyspnea, Left ventricular hypertrophy, Left atrial enlargement, Abnormality of the left ventricular outflow tract, Mitral regurgitation)

      HPOsFreeText: Maximal LV thickness 33 mm

      CaseNotHPOs: HP:0005110, HP:0001297, HP:0004756 (Atrial fibrillation, Stroke, Ventricular tachycardia)

      NotHPOsFreeText: N/A

      CaseAddInfo: N/A

      CasePreviousTesting: The gene panel included 10 sarcomeric genes (MYH7, MYBPC3, TNNT2, TNNI3, TPM1, MYL2, MYL3, ACTC1, TNNC1, MYH6), 9 genes encoding Z-disk components and Ca2+ homeostasis factors (LDB3, CSRP3, TCAP, VCL, ACTN2, MYOZ2, NEXN, JPH2, PLN), and 4 genes involved in HCM phenocopies (GLA, LAMP2, PRKAG2, TTR), All probands had left ventricular wall thickness >= 15 mm and no other diseases that can cause secondary hypertrophy

      CaseGenotypingMethod: The coding region, flanking sequences, and untranslated regions of each gene were enriched by LC-PCR, amplified, and sequenced on the Illumina MiSeq or MiniSeq platform. Identified variants were then filtered for pathogenicity and confirmed by Sanger sequencing.

      Variant: NM_000257.4(MYH7):c.2207T>C (p.Ile736Thr)

      ClinVar: 164342 https://www.ncbi.nlm.nih.gov/clinvar/variation/164342/

      gnomAD: Not in gnomAD

      Multiple Gene Variants

      (1) NEXN Variant

      Variant: NM_144573.3(NEXN):c.835C>T (p.Arg279Cys)

      ClinVar: 30994 https://www.ncbi.nlm.nih.gov/clinvar/variation/30994/

      gnomAD: 0.006303, http://gnomad.broadinstitute.org/variant/1-78392548-C-T

    1. 9

      Case9: Male, 46 years onset, 48 years diagnosis, Italy

      HPOsFreeText: See Group Phenotypes, ERT started at 48, GAA Activity at ~7.5 pmol/min/mg before ERT and ~11 after

      GroupGenotypingMethod: PCR Amplification and GAA Gene Sequencing


      Variant1: NM_000152.4:c.-32-13T>G

      ClinVar: 4027 https://www.ncbi.nlm.nih.gov/clinvar/variation/4027/

      gnomAD: Ashkenazi Jewish 5.541e-3, Overall 3.401e-3 http://gnomad.broadinstitute.org/variant/17-78078341-T-G


      Variant2: NM_000152.4:c.525delT (p.Glu176Argfs*45)

      ClinVar: 4033 https://www.ncbi.nlm.nih.gov/clinvar/variation/4033/

      gnomAD: European (Non-Finnish) 1.880e-4, Overall 9.959e-5 http://gnomad.broadinstitute.org/variant/17-78078909-CT-C


      CaseAddInfo: Late Onset Pompe Disease

    2. 8

      Case8: Male, 16 years onset, 36 years diagnosis, Italy

      HPOsFreeText: See Group Phenotypes, ERT started at 36, GAA Activity at ~5 pmol/min/mg before ERT and ~13 after

      GroupGenotypingMethod: PCR Amplification and GAA Gene Sequencing


      Variant1: NM_000152.4:c.-32-13T>G

      ClinVar: 4027 https://www.ncbi.nlm.nih.gov/clinvar/variation/4027/

      gnomAD: Ashkenazi Jewish 5.541e-3, Overall 3.401e-3 http://gnomad.broadinstitute.org/variant/17-78078341-T-G


      Variant2: NM_000152.4:c.525delT (p.Glu176Argfs*45)

      ClinVar: 4033 https://www.ncbi.nlm.nih.gov/clinvar/variation/4033/

      gnomAD: European (Non-Finnish) 1.880e-4, Overall 9.959e-5 http://gnomad.broadinstitute.org/variant/17-78078909-CT-C


      CaseAddInfo: Late Onset Pompe Disease

    3. 18

      Case18: Female, 50 years onset, 53 years diagnosis, Italy

      HPOsFreeText: See Group Phenotypes, ERT started at 56, GAA Activity at ~6 pmol/min/mg before ERT and ~9 after

      GroupGenotypingMethod: PCR Amplification and GAA Gene Sequencing


      Variant1: NM_000152.4:c.-32-13T>G

      ClinVar: 4027 https://www.ncbi.nlm.nih.gov/clinvar/variation/4027/

      gnomAD: Ashkenazi Jewish 5.541e-3, Overall 3.401e-3 http://gnomad.broadinstitute.org/variant/17-78078341-T-G


      Variant2: NM_000152.4:c.1465G>A (p.Asp489Asn)

      ClinVar: 92465 https://www.ncbi.nlm.nih.gov/clinvar/variation/92465/

      gnomAD: European (Finnish) 4.621e-5, Overall 1.195e-5 http://gnomad.broadinstitute.org/variant/17-78084553-G-A


      CaseAddInfo: Late Onset Pompe Disease

    4. 3

      Case3: Male, 30 years onset, 66 years diagnosis, Italy

      HPOsFreeText: See Group Phenotypes, ERT started at 67, GAA Activity at ~8 pmol/min/mg before ERT and ~10 after

      GroupGenotypingMethod: PCR Amplification and GAA Gene Sequencing


      Variant1: NM_000152.4:c.-32-13T>G

      ClinVar: 4027 https://www.ncbi.nlm.nih.gov/clinvar/variation/4027/

      gnomAD: Ashkenazi Jewish 5.541e-3, Overall 3.401e-3 http://gnomad.broadinstitute.org/variant/17-78078341-T-G


      Variant2: NM_000152.4:c.1927G>A (p.Gly643Arg)

      ClinVar: 4023 https://www.ncbi.nlm.nih.gov/clinvar/variation/4023/

      gnomAD: European (Non-Finnish) 3.667e-5, Overall 2.479e-5 http://gnomad.broadinstitute.org/variant/17-78086713-G-A


      CaseAddInfo: Late Onset Pompe Disease

    5. 1

      Case1: Male, 21 years onset, 31 years diagnosis, Italy

      HPOsFreeText: See Group Phenotypes, ERT started at 31, GAA Activity at ~7.5 pmol/min/mg before ERT and ~8 after

      GroupGenotypingMethod: PCR Amplification and GAA Gene Sequencing


      Variant1: NM_000152.4:c.-32-13T>G

      ClinVar: 4027 https://www.ncbi.nlm.nih.gov/clinvar/variation/4027/

      gnomAD: Ashkenazi Jewish 5.541e-3, Overall 3.401e-3 http://gnomad.broadinstitute.org/variant/17-78078341-T-G


      Variant2: NM_000152.4:c.1927G>A (p.Gly643Arg)

      ClinVar: 4023 https://www.ncbi.nlm.nih.gov/clinvar/variation/4023/

      gnomAD: European (Non-Finnish) 3.667e-5, Overall 2.479e-5 http://gnomad.broadinstitute.org/variant/17-78086713-G-A


      CaseAddInfo: Late Onset Pompe Disease

    1. 7

      Patient7: 71yo

      CasePresentingHPOs: HP:0003325, HP:0002093, HP:0002315, HP:0004887, HP:0000822, HP:0003141, HP:0002870, HP:0020038

      HPOsFreeText: morning headache, GAA = 7%, BMI = 28.3, temporo-insular lacunes

      CaseNotHPOs:

      NotHPOsFreeText:

      CaseAddInfo: 18yr disease duration, variants in trans

      CasePMIDs:

      CasePreviousTesting: same as group

      CaseGenotypingMethod: same as group

      Variant1: NM_000152.4(GAA):c.-32-13T>G

      Clinvar: 4027, https://www.ncbi.nlm.nih.gov/clinvar/variation/4027/

      gnomAD: 0.003582, http://exac.broadinstitute.org/variant/17-78078341-T-G

      Variant2: NM_000152.3:c.2530_2541del

      CAID: CA658795292, http://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/by_caid?caid=CA658795292

      gnomAD: n/a

    1. #4

      Case#: Subject number 4, female, 11 years (report)

      DiseaseAssertion: Pompe disease

      FamilyInfo: No known family member with PD

      CasePresentingHPOs: HP:0001638 (cardiomyopathy), HP:0002153 (hyperkalemia), HP:0001324 (muscle weakness)

      CaseHPOFreeText:

      CaseNotHPOs: HP:0003546 (Exercise intolerance), HP:0001252 (Hypotonia), HP:0003326 (Myalgia), HP:0002015 (dysphagia), HP:0002098 (respiratory distress), HP:0002094 (dyspnoea)

      CaseNotHPOFreeText: no biopsy, not asymptomatic

      CasePreviousTesting: "Enzymatic activity was detected by fluorometric techniques" "The GAA sequence was performed in all patients whose enzyme activity measured in DBS and lymphocytes was decreased."

      glucosidase activity: GAA activity was 0.16 mol/Lh in dried blood spots (normal range >0.75).

      Variant 1: NM_000152.5(GAA):c.-32-13T>C

      Variant 1 ClinVarID: 4027

      Variant 1 CAid: CA116606

      Variant 2: NM_000152.5(GAA):c.1831G>A (p.Gly611Ser)

      Variant 2 ClinVarID: 935199

      Variant 2 CAid: CA401369553

      Zygosity: Compound heterozygous

      ParentalGenotype: N/A

      PreviouslyPublished: N/A

    1. Case Report

      Case#: Patient (case report), male, 1 month old, ethnicity unknown

      DiseaseAssertion: Pompe disease

      FamilyInfo: No history of consanguinity in parents. The patient has a 15 months old sibling that is healthy.

      Family medical history was notable for tuberous sclerosis in the patient’s father’s first cousin.

      CasePresentingHPOs: HP:0200128, HP:0001639, HP:0002240

      (Biventricular hypertrophy, Hypertrophic cardiomyopathy, Hepatomegaly,

      CaseHPOFreeText: Echogenic mass within the left ventricle.

      Short-axis images revealed the possibility of an additional mass within the left ventricle adjacent to the papillary muscles

      Right axis deviation

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      Normal results were noted for levels of plasma amino acids, lactate and pyruvate, total and free carnitine, and acylcarnitine compounds. Urine organic acid quantitation was normal.

      PR interval was normal

      CasePreviousTesting: The serum creatine kinase was elevated (478 U/L; normal 60–305 U/L).

      GAA activity in whole blood from a blood spot was 1.8 pmol/punch/hour (control 10–49 pmol/punch/hour)

      The GAA gene was sequenced.

      Variant 1: NM_000152.5(GAA):c.525del (p.Glu176fs)

      ClinVar: 4033

      CAID: CA220406

      gnomAD: N/A

      Variant 2: NM_000152.5(GAA):c.1927G>A (p.Gly643Arg)

      ClinVar: 4023

      CAID: CA116596

      gnomAD: Highest population MAF=0.00003667 (Euroean (non-Finnish))

      ParentalGenotype:N/A

      PreviouslyPublished:N/A

    1. 6

      Case#: Subject number 6(L)

      DiseaseAssertion: Late Onset Pompe disease

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: CK testing: 176 U/L (28-300 U/L is normal), AST: 61 U/L (24-72 U/L is normal), ALT: 39 U/L (17-63 U/L is normal), Hex4: 5.9 mmol/mol Creatinine (≤20 mmol/mol Creatinine is normal)

      glucosidase activity: GAA activity #1 was 1.32 micromole/L/h and GAA activity #2 (NBS) 0.88 in dried blood spots (>2.10 micromole/L/h is normal). 0.7 in confirmatory testing (>6.7 is normal).

      Variant 1: NM_000152.5(GAA):c.-32-13T>G

      Variant 1 ClinVarID: 4027

      Variant 1 CAid: CA116606

      Variant 2: NM_000152.5(GAA):c.-32-13T>G

      Variant 2 ClinVarID: 4027

      Variant 2 CAid: CA116606

      Zygosity: homozygous

      ParentalGenotype: N/A

      PreviouslyPublished: N/A

    2. 2

      Case#: Subject number 2(L)

      DiseaseAssertion: Late Onset Pompe disease

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: CK testing: 72 U/L (28-300 U/L is normal), AST: 21 U/L (24-72 U/L is normal), ALT: 23 U/L (17-63 U/L is normal), Hex4: 4.2 mmol/mol Creatinine (≤20 mmol/mol Creatinine is normal)

      glucosidase activity: GAA activity #1 was 1.86 micromole/L/h and GAA activity #2 (NBS) 1.44 in dried blood spots (>2.10 micromole/L/h is normal). 5.3 in confirmatory testing (>6.7 is normal).

      Variant 1: NM_000152.5(GAA):c.2238G>C

      Variant 1 ClinVarID: 265160

      Variant 1 CAid: CA8815665

      Variant 2: NM_000152.5(GAA):c.1552-3C>G

      Variant 2 ClinVarID: 419722

      Variant 2 CAid: CA8815383

      Zygosity: compound heterozygous

      ParentalGenotype: N/A

      PreviouslyPublished: N/A

    1. c.743T > C(p.Leu248Pro)

      Case84

      HPOsFreeText: See Group Phenotypes


      CasePreviousTesting: Sanger sequencing

      CaseMethod1: Sanger sequencing and PCR Amplification

      CaseMethod2: Whole Exome Sequencing (WES)

      CaseGenotypingMethod: Patients were previously confirmed with Pompe disease by Sanger sequencing to capture the pathogenic variants. The process was repeated as part of the study taking care to amplify the coding regions and exon/intron boundaries to compare with the WES results afterwards.


      Variant1: NM_000152.4:c.743T>C (p.Leu248Pro)

      CAID: CA401363263 https://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/allele?hgvs=NM_000152.4%3Ac.743T%3EC

      gnomAD: European (Non-Finnish) 1.551e-5, Overall 7.079e-6 http://gnomad.broadinstitute.org/variant/17-78081406-T-C


      Variant2: NM_000152.4:c.-32-13T>G

      ClinVar: 4027 https://www.ncbi.nlm.nih.gov/clinvar/variation/4027/

      gnomAD: Ashkenazi Jewish 5.541e-3, Overall 3.401e-3 http://gnomad.broadinstitute.org/variant/17-78078341-T-G


      CaseAddInfo: Adult Late Onset Pompe Disease

    2. c.525delT(p.Glu176Argfs*45)

      Case46

      HPOsFreeText: See Group Phenotypes


      CasePreviousTesting: Sanger sequencing

      CaseMethod1: Sanger sequencing and PCR Amplification

      CaseMethod2: Whole Exome Sequencing (WES)

      CaseGenotypingMethod: Patients were previously confirmed with Pompe disease by Sanger sequencing to capture the pathogenic variants. The process was repeated as part of the study taking care to amplify the coding regions and exon/intron boundaries to compare with the WES results afterwards.


      Variant1: NM_000152.4:c.525delT (p.Glu176Argfs*45)

      ClinVar: 4033 https://www.ncbi.nlm.nih.gov/clinvar/variation/4033/

      gnomAD: European (Non-Finnish) 1.880e-4, Overall 9.959e-5 http://gnomad.broadinstitute.org/variant/17-78078909-CT-C


      Variant2: NM_000152.4:c.1655T>C (p.Leu552Pro)

      ClinVar: 279811 https://www.ncbi.nlm.nih.gov/clinvar/variation/279811/

      gnomAD: European (Non-Finnish) 7.053e-5, Overall 3.188e-5 http://gnomad.broadinstitute.org/variant/17-78085800-T-C


      CaseAddInfo: Infantile Onset Pompe Disease

    3. c.1754+1G > A

      Case8

      HPOsFreeText: See Group Phenotypes


      CasePreviousTesting: Sanger sequencing

      CaseMethod1: Sanger sequencing and PCR Amplification

      CaseMethod2: Whole Exome Sequencing (WES)

      CaseGenotypingMethod: Patients were previously confirmed with Pompe disease by Sanger sequencing to capture the pathogenic variants. The process was repeated as part of the study taking care to amplify the coding regions and exon/intron boundaries to compare with the WES results afterwards.


      Variant1: NM_000152.4:c.1754+1G>A

      ClinVar: 286458 https://www.ncbi.nlm.nih.gov/clinvar/variation/286458/

      gnomAD: Not in gnomAD


      Variant2: NM_000152.4:c.722_723delTT (p.Phe241Cysfs*88)

      CAID: CA658795235 https://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/allele?hgvs=NM_000152.4%3Ac.722_723delTT

      gnomAD: Not in gnomAD


      CaseAddInfo: Infantile Onset Pompe Disease

    4. c.953T > C(p.Met318Thr)

      Case55

      HPOsFreeText: See Group Phenotypes


      CasePreviousTesting: Sanger sequencing

      CaseMethod1: Sanger sequencing and PCR Amplification

      CaseMethod2: Whole Exome Sequencing (WES)

      CaseGenotypingMethod: Patients were previously confirmed with Pompe disease by Sanger sequencing to capture the pathogenic variants. The process was repeated as part of the study taking care to amplify the coding regions and exon/intron boundaries to compare with the WES results afterwards.


      Variant1: NM_000152.4:c.953T>C (p.Met318Thr)

      ClinVar: 4021 https://www.ncbi.nlm.nih.gov/clinvar/variation/4021/

      gnomAD: African 8.608e-5, Overall 4.485e-5 http://gnomad.broadinstitute.org/variant/17-78081693-T-C


      Variant2: NM_000152.4:c.-32-13T>G

      ClinVar: 4027 https://www.ncbi.nlm.nih.gov/clinvar/variation/4027/

      gnomAD: Ashkenazi Jewish 5.541e-3, Overall 3.401e-3 http://gnomad.broadinstitute.org/variant/17-78078341-T-G


      CaseAddInfo: Juvenile Late Onset Pompe Disease

    1. CaseOPOPD-50: Male, Taiwan, Birth diagnosis

      HPOsFreeText: GAA (MS/MS) enzyme activity at 0.68 umol/hr/L

      GenotypingMethod: GAA Gene Sequencing and PCR Amplification


      Variant1: NM_000152.4:c.1634C>T (p.Pro545Leu)

      ClinVar: 4032 https://www.ncbi.nlm.nih.gov/clinvar/variation/4032/

      gnomAD: European (Finnish) 1.199e-4, Overall 1.774e-5 http://gnomad.broadinstitute.org/variant/17-78084822-C-T


      Variant2: NM_000152.4:c.1726G>A (p.Gly576Ser)

      ClinVar: 92467 https://www.ncbi.nlm.nih.gov/clinvar/variation/92467/

      gnomAD: East Asian 0.1427, Overall 0.01700 http://gnomad.broadinstitute.org/variant/17-78085871-G-A


      CaseAddInfo: One Pompe Mutation allele and One Pseudodeficency Mutation allele

    2. CaseOPOPD-40: Female, Taiwan, Birth diagnosis

      HPOsFreeText: GAA (MS/MS) enzyme activity at 0.99 umol/hr/L

      GenotypingMethod: GAA Gene Sequencing and PCR Amplification


      Variant1: NM_000152.4:c.872T>C (p.Leu291Pro)

      CAID: CA401363854 https://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/allele?hgvs=NM_000152.4%3Ac.872T%3EC

      gnomAD: Not in gnomAD


      Variant2: NM_000152.4:c.1726G>A (p.Gly576Ser)

      ClinVar: 92467 https://www.ncbi.nlm.nih.gov/clinvar/variation/92467/

      gnomAD: East Asian 0.1427, Overall 0.01700 http://gnomad.broadinstitute.org/variant/17-78085871-G-A


      CaseAddInfo: One Pompe Mutation allele and One Pseudodeficency Mutation allele, 2 others have the same genotypes

    1. 7

      Case#: Patient 7, Gender N/A, Onset 3-4 months. Death around 1-2 years, Southeast Asian

      DiseaseAssertion: Pompe disease

      FamilyInfo: N/A

      CasePresentingHPOs: P:0001639. HP:0005165, HP:0001270, HP:0002240

      (Dyspnea, Shortened PR interval, Motor delay, Hepatomegaly

      CaseHPOFreeText: BVH, Severe MR, SDD, CK 550u/l, EF

      CaseNotHPOs:

      CaseNotHPOFreeText:

      CasePreviousTesting: Creatine Kinase enzyme 550u/l, Ejection fraction 30%, GAA enzyme activity in leukocytes was 0.05% of normal control value.

      PCR of all exons was performed and subsequently subjected to capillary Sanger sequencing in both directions

      Variant 1: NM_000152.5(GAA):c.1411_1414del (p.Glu471fs)

      ClinVar: 188874

      CAID: CA274067

      gnomAD: Highest population MAF = 0.0002513 in East Asian

      Variant 2: NM_000152.5(GAA):c.1933G>C (p.Asp645His)

      ClinVar: 189013

      CAID: CA274256

      gnomAD: Highest population MAF = 0.00005534 (East Asian)

      ParentalGenotype: Father was the carrier of variant 1 NM_000152.5(GAA):c.1411_1414del (p.Glu471fs)

      mother was carrier of variant 2 NM_000152.5(GAA):c.1933G>C (p.Asp645His)

      PreviouslyPublished: N/A

    2. 12

      Case#: Patient 12, Gender N/A, Onset at 3-4 months old, Southeast Asian

      DiseaseAssertion: Pompe disease

      FamilyInfo: N/A

      CasePresentingHPOs: HP:0001252, HP:0002090, HP:0002878, HP:0005165

      (Hypotonia, Pneumonia, Respiratory failure, Shortened PR interval)

      CaseHPOFreeText: Failed endotracheal extubation, BVH, mild sub-aortic obstruction, SDD, Ejection fraction 13%, creatine kinase levels 966 u/l

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: GAA enzyme activity in leukocytes was 0.10% of normal control value.

      PCR of all exons was performed and subsequently subjected to capillary Sanger sequencing in both directions

      Variant 1: c.1327-2A>G

      ClinVar: N/A

      CAID: CA401366177

      gnomAD: Highest population MAF = 0.0002297 (African)

      Variant 2: c.1437G>C (p.Lys479Asn)

      ClinVar: N/A

      CAID: CA401366671

      gnomAD: N/A

      ParentalGenotype: Mother was the carrier of variant 1 c.1327-2A>G

      Father was the carrier of variant 2 c.1437G>C (p.Lys479Asn)

      PreviouslyPublished:

    3. 1

      Case#: Patient 1, gender N/A, Age of onset was 7-8 months (died at 3 years of age), Southeast Asian

      DiseaseAssertion: Pompe Disease

      FamilyInfo:

      CasePresentingHPOs: HP:0001252, HP:0001270, HP:0001638, HP:0005165 (Muscular Hypotonia, Motor delay, Cardiomyopathy, Shortened PR interval)

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: GAA activity in leukocytes was 0% of the normal control value.

      PCR of all exons was performed and subsequently subjected to capillary Sanger sequencing in both directions

      Variant1: NM_000152.5(GAA):c.876C>G (p.Tyr292Ter)

      ClinVar: 637958

      CAID: CA401363871

      gnomAD: N/A

      Variant2: NM_000152.5:c.1003G>A (p.Gly335Arg)

      ClinVar: 972790

      CAID: CA501005

      gnomAD: Highest population MAF = 0.00003266 (South Asian).

      ParentalGenotype: Patient inherited variant 1 (NM_000152.5(GAA):c.876C>G (p.Tyr292Ter) from father.

      Variant 2 (c.1003G>A (p.Gly335Arg)) was inherited from mother PreviouslyPublished:N/A

    4. 2

      Case#: Patient 2, Gender N/A, 1-2 months old at onset, Southeast Asian

      DiseaseAssertion: Pompe disease

      FamilyInfo: Patient has two previously deceased siblings with cardiomyopathy

      CasePresentingHPOs: HP:0002789, HP:0002240, HP:0005165, HP:0001639 (Tachypnea, Hepatomegaly, Shortened PR interval, Hypertrophic cardiomyopathy)

      CaseHPOFreeText: BVH, EF 30%

      CaseNotHPOs: N/A

      CaseNotHPOFreeText:N/A

      CasePreviousTesting: GAA activity in leukocytes was 0% of the normal control value

      PCR of all exons was performed and subsequently subjected to capillary Sanger sequencing in both directions

      Variant1: NM_000152.5(GAA):c.1935C>A (p.Asp645Glu)

      ClinVar: 4029

      CAID: CA116610

      gnomAD: Highes population MAF = 0.001729 (East Asian)

      Variant2: NM_000152.5(GAA):c.1933G>C (p.Asp645His)

      ClinVar:<br /> 189013

      CAID: CA274256

      gnomAD: Highest population MAF = 0.00005534 (East Asian)

      ParentalGenotype: Father was carrier of variant 1 c.1935C>A ( p.Asp645Glu

      Mother was carrier of the Variant 2 c.1933G>C (p.Asp645His

      PreviouslyPublished:

    1. 6

      Patient6: Female

      CasePresentingHPOs: HP:0002194, HP:0001522

      HPOsFreeText: ERT dosage = 20 mg/kg/2 w, CRIM negative

      CaseNotHPOs: HP:0004887

      NotHPOsFreeText: No reversal of HCM

      CaseAddInfo: Symptom onset at 1mo, diagnosis and ERT at 4mo, ERT lasted for 4mo, died at 11mo

      CasePMIDs: 22252923, 27629047

      CasePreviousTesting: same as group

      CaseGenotypingMethod: same as group

      Variant: NM_000152.3:c.1657C>T

      CAID: CA401368835, http://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/allele?hgvs=NM_000152.3%3Ac.1657C%3ET

      gnomAD: n/a

    2. 2

      Patient2: female

      CasePresentingHPOs: HP:0004887, HP:0002194, HP:0001263, HP:0002463, HP:0002870, HP:0011003, HP:0002289

      HPOsFreeText: ERT dosage = 20 mg/kg/2 w, use of BiPAP, could sit independently, HCM reversal, CRIM positive, BiPAP ventilation at night

      CaseNotHPOs: HP:0000407

      NotHPOsFreeText:

      CaseAddInfo: Symptom onset and diagnosis at 1d, ERT at 3w, required BiPAP at 57mo, ERT lasted for 77mo, currently 6.5yo

      CasePMIDs: 8401535

      CasePreviousTesting: same as group

      CaseGenotypingMethod: same as group

      Variant: NM_000152.4(GAA):c.1927G>A (p.Gly643Arg)

      ClinVar: 4023, https://www.ncbi.nlm.nih.gov/clinvar/variation/4023/

      gnomAD: 5.884e-05, http://exac.broadinstitute.org/variant/17-78086713-G-A

    1. 7

      Case#: Subject number 7, male, 62 years (diagnosis), 66 years (baseline visit), 67 years (ERT), 67 years (ventilation)

      DiseaseAssertion: Pompe disease

      FamilyInfo: N/A

      CasePresentingHPOs: HP:0001324 (Muscle Weakness), HP:0002098 (respiratory distress)

      CaseHPOFreeText: mechanical ventilation at last visit

      CaseNotHPOs: HP:0003236 (Elevated circulating creatine kinase concentration), HP:0002870 (obstructive sleep apnea)

      CaseNotHPOFreeText: no mechanical ventilation at Baseline Visit

      CasePreviousTesting: "reduced enzymatic activity on fibroblasts, blood leukocytes or skeletal muscle and/or the presence of two known mutations in the GAA gene"

      PreviouslyPublished: N/A

    2. 2

      Case#: Subject number 2, female, 20 years (diagnosis), 48 years (baseline visit), 39 years (ERT), 34 years (ventilation)

      DiseaseAssertion: Pompe disease

      FamilyInfo: N/A

      CasePresentingHPOs: HP:0001324 (Muscle Weakness), HP:0002098 (respiratory distress)

      CaseHPOFreeText: mechanical ventilation at Baseline Visit, mechanical ventilation at last visit

      CaseNotHPOs: HP:0003236 (Elevated circulating creatine kinase concentration), HP:0002870 (obstructive sleep apnea)

      CaseNotHPOFreeText:

      CasePreviousTesting: "reduced enzymatic activity on fibroblasts, blood leukocytes or skeletal muscle and/or the presence of two known mutations in the GAA gene"

      PreviouslyPublished: N/A

    3. 30

      Case#: Subject number 30, male, 12 years (baseline visit)

      DiseaseAssertion: Pompe disease

      FamilyInfo: N/A

      CasePresentingHPOs: HP:0003236 (Elevated circulating creatine kinase concentration)

      CaseHPOFreeText:

      CaseNotHPOs: HP:0002870 (obstructive sleep apnea), HP:0002098 (respiratory distress), HP:0001324 (Muscle Weakness)

      CaseNotHPOFreeText: no mechanical ventilation at Baseline Visit, no mechanical ventilation at last visit

      CasePreviousTesting: "reduced enzymatic activity on fibroblasts, blood leukocytes or skeletal muscle and/or the presence of two known mutations in the GAA gene"

      PreviouslyPublished: N/A

    4. 5

      Case#: Subject number 5, female, 20 years (diagnosis), 45 years (baseline visit), 42 years (ERT)

      DiseaseAssertion: Pompe disease

      FamilyInfo: N/A

      CasePresentingHPOs: HP:0001324 (Muscle Weakness)

      CaseHPOFreeText:

      CaseNotHPOs: HP:0003236 (Elevated circulating creatine kinase concentration), HP:0002870 (obstructive sleep apnea), HP:0002098 (respiratory distress)

      CaseNotHPOFreeText: no mechanical ventilation at Baseline Visit, no mechanical ventilation at last visit

      CasePreviousTesting: "reduced enzymatic activity on fibroblasts, blood leukocytes or skeletal muscle and/or the presence of two known mutations in the GAA gene"

      PreviouslyPublished: N/A

    5. 4

      Case#: Subject number 4, female, 56 years (diagnosis), 63 years (baseline visit), 59 years (ERT)

      DiseaseAssertion: Pompe disease

      FamilyInfo: N/A

      CasePresentingHPOs: HP:0001324 (Muscle Weakness)

      CaseHPOFreeText:

      CaseNotHPOs: HP:0003236 (Elevated circulating creatine kinase concentration), HP:0002870 (obstructive sleep apnea), HP:0002098 (respiratory distress)

      CaseNotHPOFreeText: no mechanical ventilation at Baseline Visit, no mechanical ventilation at last visit

      CasePreviousTesting: "reduced enzymatic activity on fibroblasts, blood leukocytes or skeletal muscle and/or the presence of two known mutations in the GAA gene"

      PreviouslyPublished: N/A

    1. Patient 1

      Case#: Patient 1, female, symptoms began at birth, began ERT at 2.4mo

      DiseaseAssertion: Pompe Disease

      FamilyInfo: N/A

      CasePresentingHPOs: HP:0002789, HP:0001639, HP:0010628, HP:0000010 (tachypnea, hypertrophic cardiomyopathy, facial nerve palsy, persistent urinary tract infections)

      CaseHPOFreeText: diagnosed IOPD, frequent airway infections, motor function significant decline

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: <1% normal GAA expression in fibroblast; after ERT treatment had 100% enzyme activity in cell lysates; unclear how patient was diagnosed

      Variant 1: NM_000152.5:c.2481+102_2646+31del538

      Variant 1 ClinVarID: 657307

      Variant 1 CAid: CA65879529

      Variant 2: NM_000152.5:c.2481+102_2646+31del538

      Variant 2 ClinVarID: 657307

      Variant 2 CAid: CA658795291

      ParentalGenotype: Not provided

    1. 3.1 Description of the study population

      Patient4: IOPD Group, 12 days old

      CasePresentingHPOs:

      HPOsFreeText: LDH = 432 U/L, CK = 458 U/L, ALT = 37 U/L, AST = 80 U/L, Mann-Whitney Test = 3

      CaseNotHPOs:

      NotHPOsFreeText:

      CaseAddInfo:

      CasePMIDs:

      CasePreviousTesting: same as group

      CaseGenotypingMethod: same as group

      Variant1: NM_000152.3:c.872T>C

      CAID: CA401363854, http://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/by_caid?caid=CA401363854

      gnomAD: n/a

      Variant2: NM_000152.4(GAA):c.1935C>A (p.Asp645Glu)

      ClinVar: 4029, https://www.ncbi.nlm.nih.gov/clinvar/variation/4029/

      gnomAD: 0.0001240, https://gnomad.broadinstitute.org/variant/17-78086721-C-A

    2. 3.1 Description of the study population

      Patient2: IOPD Group, 10days old

      CasePresentingHPOs:

      HPOsFreeText: LDH = 516 U/L, CK = 385 U/L, ALT = 12 U/L, AST = 73 U/L, Mann-Whitney Test = 2

      CaseNotHPOs:

      NotHPOsFreeText:

      CaseAddInfo:

      CasePMIDs:

      CasePreviousTesting: same as group

      CaseGenotypingMethod: same as group

      Variant: NM_000152.4(GAA):c.1935C>A (p.Asp645Glu)

      ClinVar: 4029, https://www.ncbi.nlm.nih.gov/clinvar/variation/4029/

      gnomAD: 0.0001240, https://gnomad.broadinstitute.org/variant/17-78086721-C-A

    3. 3.1 Description of the study population

      Patient8: IOPD Group, 12days old

      CasePresentingHPOs:

      HPOsFreeText: LDH = 418 U/L, CK = 483 U/L, ALT = 44 U/L, AST = 93 U/L, Mann-Whitney Test = 2

      CaseNotHPOs:

      NotHPOsFreeText:

      CaseAddInfo:

      CasePMIDs:

      CasePreviousTesting: same as group

      CaseGenotypingMethod: same as group

      Variant: NM_000152.4(GAA):c.1935C>A (p.Asp645Glu)

      ClinVar: 4029, https://www.ncbi.nlm.nih.gov/clinvar/variation/4029/

      gnomAD: 0.0001240, https://gnomad.broadinstitute.org/variant/17-78086721-C-A

    1. LOPD-9

      CaseLOPD-9: 3 weeks diagnosis

      HPOsFreeText: GAA activity 4.1 (nmol · h−1 · mg−1), Mean percentage of normal 5.8%

      GenotypingMethod: Newborn Screening Panels


      Variant1: NM_000152.4:c.266G>A (p.Arg89His)

      ClinVar: 283219 https://www.ncbi.nlm.nih.gov/clinvar/variation/283219/

      gnomAD: Ashkenazi Jewish 1.168e-3, Overall 1.395e-4 http://gnomad.broadinstitute.org/variant/17-78078651-G-A


      Chromosomal code not provided

      Variant2: NP_000143.2:p.E176fsX45

      ClinVar: N/A

      gnomAD: N/A


      CaseAddInfo: Late Onset Pompe Disease

    2. PD/Pathogenic-1

      CasePD/Pathogenic-1: 5 weeks diagnosis

      HPOsFreeText: GAA activity 16.6 (nmol · h−1 · mg−1), Mean percentage of normal 23.2%

      GenotypingMethod: Newborn Screening Panels


      Variant1: NM_000152.4:c.1726G>A (p.Gly576Ser)

      ClinVar: 92467 https://www.ncbi.nlm.nih.gov/clinvar/variation/92467/

      gnomAD: East Asian 0.1427, Overall 0.01700 http://gnomad.broadinstitute.org/variant/17-78085871-G-A


      Variant2: NM_000152.4:c.2065G>A (p.Glu689Lys)

      ClinVar: 4030 https://www.ncbi.nlm.nih.gov/clinvar/variation/4030/

      gnomAD: East Asian 0.2355, Overall 0.05524 http://gnomad.broadinstitute.org/variant/17-78087041-G-A


      Variant3: NM_000152.4:c.752C>T (p.Ser251Leu)

      ClinVar: 325781 https://www.ncbi.nlm.nih.gov/clinvar/variation/325781/

      gnomAD: East Asian 2.760e-3, Overall 3.540e-4 http://gnomad.broadinstitute.org/variant/17-78081415-C-T


      Variant4: NM_000152.4:c.761C>T (p.Ser254Leu)

      ClinVar: 325782 https://www.ncbi.nlm.nih.gov/clinvar/variation/325782/

      gnomAD: East Asian 2.759e-3, Overall 1.947e-4 http://gnomad.broadinstitute.org/variant/17-78081424-C-T


      CaseAddInfo: Patient has one pseudodeficency allele and one pathogenic allele, Nomenclature claims Variant 1 and 2 are in cis, Nomenclature claims Variant 3 and 4 are in cis

    1. 14

      Case#: Subject number 14, male, 63 years (report), 47 years (onset), 58 years (diagnosis)

      DiseaseAssertion: Pompe disease

      FamilyInfo: N/A

      CasePresentingHPOs: HP:0000365 (hearing loss), HP:0000360 (tinnitus)

      CaseHPOFreeText: On BiPAP, ambulatory, assistive device (cane)

      CaseNotHPOs: HP:0000821, HP:0002650, HP:0002617, HP:0000939, HP:0009830, HP:0100647, HP:0010788, HP:0001638 (hypothyroidism, scoliosis, aneurysm, osteoporosis, peripheral neuropathy, Graves disease, Testicular cancer, cardiomyopathy)

      CaseNotHPOFreeText: no infusion reaction, no tracheostomy

      CasePreviousTesting: “documented deficiency of acid alpha-glucosidase enzyme activity”; on enzyme replacement therapy

      Variant 1: NM_000152.5(GAA):c.-32-13T>G (p.Tyr766Ser)

      Variant 1 ClinVarID: 4027

      Variant 1 CAid: CA116606

      Variant 2: NM_000152.5(GAA):c.1445C>G

      Variant 2 ClinVarID: N/A

      Variant 2 CAid: CA401366794

      Zygosity: Compound heterozygous

      ParentalGenotype: N/A

      PreviouslyPublished: N/A

    2. 1

      Case#: Subject number 1, male, 22 years (report), 9 years (onset), 11 years (diagnosis)

      DiseaseAssertion: Pompe disease

      FamilyInfo: N/A

      CasePresentingHPOs: HP:0002650, HP:0001638 (Scoliosis, cardiomyopathy)

      CaseHPOFreeText: on BiPap, ambulatory

      CaseNotHPOs: HP:0002617, HP:0000365, HP:0000360, HP:0000939, HP:0009830, HP:0100647, HP:0010788, HP:0000821 (aneurysm, hearing loss, tinnitus, osteoporosis, peripheral neuropathy, Graves disease, Testicular cancer, hypothyroidism)

      CaseNotHPOFreeText: No infusion reaction, no tracheostomy

      CasePreviousTesting: “documented deficiency of acid alpha-glucosidase enzyme activity”; on enzyme replacement therapy

      Variant 1: NM_000152.5(GAA):c.1655T>C (p.Leu552Pro)

      Variant 1 ClinVarID:279811

      Variant 1 CAid:CA8815429

      Variant 1 gnomAD MAF: 0.00007053; 8/113426 (European non-Finnish)[https://gnomad.broadinstitute.org/variant/17-78085800-T-C?dataset=gnomad_r2_1]

      Variant 2: NM_000152.5(GAA):c.2238G>C (p.Trp746Cys)

      Variant 2 ClinVarID:265160

      Variant 2 CAid:CA9301331

      Variant 2 gnomAD MAF: 0.0005673; 73/128684 (European non-Finnish)[https://gnomad.broadinstitute.org/variant/17-78090815-G-C?dataset=gnomad_r2_1]

      Zygosity: Compound heterozygous

      ParentalGenotype: N/A

      PreviouslyPublished: N/A

    1. Detailed characteristics of these patients

      Patient2: female, 16yo, juvenile onset

      CasePresentingHPOs:

      HPOsFreeText: LOPD, BMI = 17.7;20.3;20.3, WGMS = 2;2;2

      CaseNotHPOs: HP:0002355

      NotHPOsFreeText: did not require respiratory support

      CaseAddInfo:

      CasePMIDs:

      CasePreviousTesting: same as group

      CaseGenotypingMethod: same as group

      Variant1:NM_000152.4(GAA):c.-32-13T>G

      Clinvar: 4027, https://www.ncbi.nlm.nih.gov/clinvar/variation/4027/

      gnomAD: 0.003582, http://exac.broadinstitute.org/variant/17-78078341-T-G

      Variant2: NM_000152.4(GAA):c.307T>G (p.Cys103Gly)

      ClinVar: 92483, https://www.ncbi.nlm.nih.gov/clinvar/variation/92483/

      gnomAD: n/a

    1. 22/F

      Patient22: Female

      CasePresentingHPOs: HP:0004887, HP:0011471, HP:0001371

      HPOsFreeText: CRIM positive, tracheostomy, able to sit independently, heart normalization

      CaseNotHPOs: HP:0002546, HP:0000365

      NotHPOsFreeText: infusion associated reaction

      CaseAddInfo: homozygous variants in trans, symptom onset and diagnosis at 4yo, ERT at 5yo

      CasePreviousTesting: same as group

      CaseGenotypingMethod: same as group

      Variant: NM_000152.4(GAA):c.1927G>A (p.Gly643Arg)

      ClinVar: 4023, https://www.ncbi.nlm.nih.gov/clinvar/variation/4023/

      gnomAD: 0.00002479, http://gnomad.broadinstitute.org/variant/17-78086713-G-A

    1. 2

      Case# Patient 2, male

      CasePresentingHPOs: HP:0003236, HP:0003325

      CaseAddInfo: 66 at onset, 72 at diagnosis

      VariantAllele1: NM_000152.4(GAA):c.-32-13T>G

      ClinVar: 4027, https://www.ncbi.nlm.nih.gov/clinvar/variation/4027/

      gnomAD: 0.003582, http://exac.broadinstitute.org/variant/17-78078341-T-G

      VariantAllele2: NM_000152.4(GAA):c.525delT (p.Glu176Argfs)

      ClinVar: 4033

      gnomAD: 7.041e-05, http://exac.broadinstitute.org/variant/17-78078909-CT-C

    2. 4

      Case# Patient 4, female

      CasePresentingHPOs: HP:0003236, HP:0003325

      CaseAddInfo: 31yo at onset, 40yo at diagnosis

      VariantAllele1: NM_000152.4(GAA):c.-32-13T>G

      ClinVar: 4027, https://www.ncbi.nlm.nih.gov/clinvar/variation/4027/

      gnomAD: 0.003582, http://exac.broadinstitute.org/variant/17-78078341-T-G

      VariantAllele2: NM_000152.4(GAA):c.1564C>G (p.Pro522Ala)

      ClinVar: 371277, https://www.ncbi.nlm.nih.gov/clinvar/variation/371277/

      gnomAD: n/a

    1. 36

      Patient36: Male, 3 year onset

      CasePresentingHPOs: HP:0001324, HP:0002098, HP:0003236 (Muscle weakness, Respiratory distress, Increased serum CK)

      HPOsFreeText: GAA activity 5.7% from leukocyte, Wheelchair needed, Respiratory Assistance needed

      CaseNotHPOs: HP:0001640, HP:0002240 (Cardiomegaly, Hepatomegaly)

      NotHPOsFreeText: N/A

      CaseAddInfo: LOPD550825

    1. 17

      Case#: P 17, Female, 5.5 mo nths old when started ERT (62.8 months old when last reported), German

      DiseaseAssertion: Pompe disease

      FamilyInfo: N/A

      CasePresentingHPOs: P:0001639 , HP:0001252 , HP:0003701, HP:0006532

      (Hypertrophic cardiomyopathy, Muscular hypotonia, Proximal muscle weakness, Recurrent Pneumonia)

      CaseHPOFreeText: Recurrent pneumonia was a complication during ERT

      Best and last motor status was walking

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: Did not required tube feeding nor ventilation

      CasePreviousTesting: CRIM status was unknown

      Antibody titer 1:800

      Variant: NM_000152.5(GAA):c.1978C>T (p.Arg660Cys)

      ClinVar: 558604

      CAID: CA8815561

      gnomAD: MAF=0.00005554 in East Asian

      ParentalGenotype: Both the paternal and maternal allele carried the NM_000152.5(GAA):c.1978C>T (p.Arg660Cys) Variant

      PreviouslyPublished: N/A

    2. 11

      Case#: P 11, Male, 2.6 months old when started ERT (Died at 14.1 months old), German

      DiseaseAssertion: Pompe disease

      FamilyInfo: N/A

      CasePresentingHPOs: HP:0001639 , HP:0001252 , HP:0003701, HP:0011951

      (Hypertrophic cardiomyopathy, Muscular hypotonia, Proximal muscle weakness, Aspiration pneumonia )

      CaseHPOFreeText: AR IV

      Patient required ventilation and tube feeding

      No motor activity reported

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: CRIM status is negative

      Antibody titer is 1:51.200

      Variant: NM_000152.5(GAA):c.1548G>A (p.Trp516Ter)

      ClinVar: 189025

      CAID: CA274281

      gnomAD: MAF=0.00001552 in European non-Finnish

      ParentalGenotype: Both the paternal and maternal allele carry the variant c.1548G>A (p.Trp516Ter)

      PreviouslyPublished: N/A

    3. 3

      Case#: P 3, Male, 4.9 months when started ERT (122.1 months old at publication date), Ethnicity unknown

      DiseaseAssertion: Pompe disease

      FamilyInfo: Table 1 includes parental genotype

      CasePresentingHPOs: HP:0001639 , HP:0001252 , HP:0003701, HP:0002028

      (Hypertrophic cardiomyopathy, Muscular hypotonia, Proximal muscle weakness, Chronic diarrhea )

      CaseHPOFreeText: Chronic diarrhea was a complication during ERT

      Patient best and last/current status was being able to sit

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: Patient did not required tube feeding

      Patient did not required ventilation

      CasePreviousTesting: CRIM status is positive in patient

      Antibody titer is 1:200

      Variant 1: c.IVS17 + 102_IVS18 + 3

      ClinVar: N/A

      CAID: 657307

      gnomAD: N/A

      Variant 2: c.1465G>T (p.Asp489Tyr)

      ClinVar: N/A

      CAID: CA401366871

      gnomAD: N/A

      ParentalGenotype: The maternal allele of the patient carried the c.IVS17 + 102_IVS18 + 31 Variant

      The paternal allele of the patient carried the c.1465G>T (p.Glu489Ter) Variant

      PreviouslyPublished: N/A

    4. 7

      Case#: P 7, Female, 2.3 months old when started ERT (90.6 months old at publication date), ethnicity unknown

      DiseaseAssertion: Pompe disease

      FamilyInfo: N/A

      CasePresentingHPOs: HP:0001639 , HP:0001252 , HP:0003701, HP:0031846, HP:0030242

      (Hypertrophic cardiomyopathy, Muscular hypotonia, Proximal muscle weakness, Femur fracture, Portal vein thrombosis)

      CaseHPOFreeText: Femur fracture and Port thrombosis were complications during ERT

      Best motor status was walking, last motor status was sitting

      Patient required ventilation

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: Did not required tube feeding

      CasePreviousTesting: CRIM status is positive

      Antibody titer is 1:800

      Variant: NM_000152.5(GAA):c.1933G>A (p.Asp645Asn)

      ClinVar: 188728

      CAID: CA273892

      gnomAD: Highest population MAF= 0.00006599 in Africans

      ParentalGenotype: Both the paternal and maternal allele carried the variant c.1933G>A (p.Asp645Asn)

      PreviouslyPublished: N/A

    1. 1

      Case#: Patient 1, Gender N/A, age N/A, ethnicity unknown

      DiseaseAssertion: Pompe disease

      FamilyInfo: N/A

      CasePresentingHPOs: HP:0001638, HP:0003756

      (Cardiomyopathy, Skeletal myopathy)

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: Sequence analysis of the GAA gene was performed in a CLIA and CAP certified laboratory.

      Cross Reactive Immune reaction was indeterminate in peripheral blood mononuclear cells (PBMCs)

      Cross Reactive Immune reaction was negative in Dried blood spots.

      Variant 1: c.437delT (p.Met146ArgfsX7)

      ClinVar: N/A

      CAID: N/A

      gnomAD: N/A

      Variant 2: NM_000152.5(GAA):c.2237G>A (p.Trp746Ter)

      ClinVar: 280063

      CAID: CA8815664

      gnomAD: Two variants with same consequence (protein) were identified.

      Highest population MAF = 0.00004011 (African)

      Highest population MAF = 0.000008834 (European non-Finnish)

      ParentalGenotype: N/A

      Previously published: N/A

    1. For GAA (Pompe disease) screening,

      CaseP5-GAA: female, ethnicity = South Asian, country origin = Nepal

      CasePresentingHPOs:

      HPOsFreeText: enzyme activity = 2.27

      CaseNotHPOs: HP:0010899, HP:0010916, HP:0003236

      CaseAddInfo: known pseudodeficiency allele (c.1726G>A)

      CasePreviousTesting: initial and confirmatory DBS, biochemical tests

      CaseGenotypingMethod: mutation analyses

      Variant: NM_000152.4(GAA):c.-32-13T>G

      Clinvar: 4027, https://www.ncbi.nlm.nih.gov/clinvar/variation/4027/

      gnomAD: n/a

    1. 3

      Case3: Female, 0.8 yr onset, 1.1 yr diagnosis, 8.9 yr report

      CasePresentingHPOs: HP:0005165 (Shortened PR interval)

      HPOsFreeText: FVC z-score sitting 0.21 (102% pred), FVC z-score supine 0.1 (101% pred), 358 CK U/l, 13.3 GAA activity (nmol/h/mg)^h from cultured fibroblasts, ECG showed delta wave suggestive of Wolff-Parkinson-White syndrome

      NotHPOsFreeText: No wheelchair used, no respiratory support

    1. Case22: Female, 46 years report

      HPOsFreeText: 3 years of ERT completed, 6 Minute Walking Test at 73 meters, Forced Vital Capacity at 68%

      GenotypingMethod: GAA Gene Sequencing


      Variant1: NM_000152.4:c.-32-13T>G

      ClinVar: 4027 http://www.ncbi.nlm.nih.gov/clinvar/variation/4027

      gnomAD: Ashkenazi Jewish 5.541e-3, Overall 3.401e-3 http://gnomad.broadinstitute.org/variant/17-78078341-T-G


      Variant2: NM_000152.4:c.1819_1836del (p.Gly607_His612del )

      CAID: CA658795266 http://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/allele?hgvs=NM_000152.4%3Ac.1819_1836del

      gnomAD: Not in gnomAD


      CaseAddInfo: Late Onset Pompe Disease

    2. Case11: Male, 57 years report

      HPOsFreeText: 9 years of ERT completed, 6 Minute Walking Test at 210 meters, Forced Vital Capacity at 31%

      GenotypingMethod: GAA Gene Sequencing


      Variant1: NM_000152.4:c.-32-13T>G

      ClinVar: 4027 http://www.ncbi.nlm.nih.gov/clinvar/variation/4027

      gnomAD: Ashkenazi Jewish 5.541e-3, Overall 3.401e-3 http://gnomad.broadinstitute.org/variant/17-78078341-T-G


      Variant2: NM_000152.4:c.525delT (p.Glu176Argfs*42)

      ClinVar: 4033 https://www.ncbi.nlm.nih.gov/clinvar/variation/4033/

      gnomAD: European (Non-Finnish) 1.880e-4, Overall 9.959e-5 http://gnomad.broadinstitute.org/variant/17-78078909-CT-C


      CaseAddInfo: Late Onset Pompe Disease

    1. 2

      Case2: Male, 18 years diagnosis, 1 year onset

      CasePresentingHPOs: HP:0009073, HP:0003198, HP:0003236, HP:0003327, HP:0008994 (Progressive proximal muscle weakness, Myopathy, Increased serum CK, Axial muscle weakness, Proximal muscle weakness in lower limbs)

      HPOsFreeText: Electromyography showed myogenic damage, Vacuolar myopathy, Serum CK is 1168.3 U/L

    1. P4

      Case#: Subject number 4, male, 5 months (onset), 34 months (first admission)

      DiseaseAssertion: Pompe disease

      FamilyInfo: "no family history of neuromuscular disorders"

      CasePresentingHPOs: HP:0001712 (left ventricular hypertrophy), HP:0002194 (delayed gross motor development), HP:0004887 (respiratory failure requiring assisted ventilation), HP:0002090 (pneumonia), HP:0002205 (recurrent respiratory infections), HP:0003819 (death in childhood)

      CaseHPOFreeText: ambulatory (transport ventilator), infantile-onset

      CaseNotHPOs:

      CaseNotHPOFreeText: no tracheostomy, no dysphagia at baseline, not on BiPAP

      CasePreviousTesting: “GAA activity in peripheral blood leukocytes lower than normal”; on enzyme replacement therapy

    1. 35-year-old female

      Case1: Female, 33 years onset, 35 years report

      CasePresentingHPOs: HP:0030148, HP:0002094, HP:0001644, HP:0001712, HP:0006673, HP:0025168, HP:0030718, HP:0031295, HP:0001667, HP:0012667, HP:0006673, HP:0031185, HP:0002150, HP:0003165, HP:0008200, HP:0008208, HP:0002375, HP:0030232, HP:0004356, HP:0001685, HP:0040014, HP:0100295, HP:0001297 (Cardiac murmur, Dyspnea, Dilated cardiomyopathy, Left ventricular hypertrophy, Reduced systolic function, Left ventricular diastolic dysfunction, Right atrial enlargement, Left atrial enlargement, Right ventricular hypertrophy, Regional left ventricular wall motion abnormality, Reduced systolic function, Increased NT-proBNP level, Hypercalciuria, Elevated serum PTH, Primary hyperparathyroidism, Parathyroid hyperplasia, Hypokinesia, Increased sarcoplasmic glycogen, Abnormality of lysosomal metabolism, Myocardial fibrosis, Increased mitochondrial number, Muscle fiber atrophy, Stroke)

      HPOsFreeText: At 33 years patient had left ventricular ejection fraction (LVEF) of 35% (normal 54–76%), while 7 months later she had LV volume of 81 ml (systolic) and 127 ml (diastolic), LV mass index (2D) of 141 g/m2; LV septum thickness of 12 mm (normal 7–10 mm); LV posterior wall thickness of 9 mm (normal 7–11 mm); end-diastolic LV diameter of 55 mm (normal 39–53 mm), and LVEF of 34% and Liver longitudinal peak systolic strain of ~8% (normal < −18%); A subsequent MRI confirmed an LVEF of 32% (normal 54–85%), LV volume/Body Surface Area (BSA) of 91 ml/m2 (systolic, normal 12–36 ml/m2) and 134 ml/m2 (diastolic, normal 49–90 ml/m2), and LV mass/BSA of 66 g/m2 (diastolic, normal 59–103 g/m2); Extensive biventricular delayed myocardial enhancement predominantly in the epicardial and transmural muscles was noted; Pro-BNP level was elevated to 3,894 pg/ml; Histologic analysis of formalin-fixed tissue revealed prominent myocyte vacuolization that were dilled with glycogen; GAA activity was measured twice in dried blood spots - once with carrier levels and once with affected levels, however the GAA activity in skin fibroblasts (16.7% normal: 260±80 nmol/h/mg protein) and in heart biopsy tissue (0.07; normal: 0.89±0.42 μmol/min/g tissue) was clearly in the affected range and partially reduced in the muscle biopsy tissues (5.86; 38% of normal: 22.91±8.4 nmol/h/mg protein); Both muscle and heart tissue glycogen content and structure tested in the low or normal ranges (muscle glycogen content 0.11 umol glucose/mg tissue; normal 0.39–1.5; muscle glycogen structure measured as glucose-1-phosphate/glucose ratio 72.22%; normal > 5%; heart glycogen content 0.14 umol glucose/mg tissue; normal > 0.047; and heart glycogen structure 23.91%; normal > 5%); Urine glucose tetrasaccharides biomarker level was normal at 1.0 mmol/mol cr (<4); The patient was also noted to have elevation of calcium (11.6 mg/dl, reference 8.9–10.1 mg/dl) and PTH (541 pg/ml, reference 15–65 pg/ml); Skeletal muscle biopsy showed denervation atrophy; Several months after LVEF declined to 20–25% (normal 54–76%) with CK-MB being 36 U/l (normal 7.0–25.0 U/l); Patient had slightly weak back extensors and her 6-min walk test showed 76.9% predicted for her age and gender

      CaseNotHPOs: HP:0040081, HP:0002792, HP:0001324, HP:0002167, HP:0000157 (Abnormal levels of creatine kinase in blood, Reduced vital capacity, Muscle weakness, Speech impairment, Lingual abnormality)

      NotHPOsFreeText: Branching enzyme activity in the heart and muscle tissue was normal; Phosphofructokinase and myophosphorylase enzymatic activities were intact

      CaseAddInfo: No family history of cardiomyopathy or sudden death

    1. 7

      Case#: Patient 7, female, diagnosed 2013 (not given age of diagnosis), age 25 during study period

      DiseaseAssertion: Pompe Disease

      FamilyInfo: None given

      CasePresentingHPOs: None given

      CaseHPOFreeText: Requires wheelchair for long distance movement

      CaseNotHPOs: None given

      CaseNotHPOFreeText: None given

      CasePreviousTesting: None given

      Variant 1: NM_000152.5:c.-32-13T>G (unclear variant nomenclature)

      Variant 1 ClinVarID: 4027

      Variant 1 CAid: CA116606

      Variant 2: NM_000152.5:c.525del (unclear variant nomenclature)

      Variant 2 ClinVarID: N/A

      Variant 2 CAid: CA220406

      ParentalGenotype: Not provided

    1. to assess the potential effects of AMO treatment on GAA normal spliced mRNA expression and activity, as well as on the pathological phenotype in muscle cells, we obtained myoblasts from a LO-GSDII patient who presented the c.-32-13T > G mutation in compound heterozygosity with the c.2646_2646+1delTG mutation in exon 18

      Patient2: myoblasts from this patient were used to measure the effects of AMO tratment on GAA normal spliced mRNA expression/activity and the pathological phenotype in muscle cells. Under basal conditions, these myotubes retained 20% of enzymatic activity compared to WT. AMO treatment partially restored the correctly splice variant of GAA mRNA (confirmed via real-time PCR).

      CasePresentingHPOs:

      HPOsFreeText: LOPD

      CaseNotHPOs:

      NotHPOsFreeText:

      CaseAddInfo:

      CasePMIDs:

      CasePreviousTesting: n/a

      CaseGenotypingMethod: comparative DNA vs. mRNA sequencing

      Variant1: NM_000152.4(GAA):c.-32-13T>G

      Clinvar: 4027, https://www.ncbi.nlm.nih.gov/clinvar/variation/4027/

      gnomAD: 0.003582, http://exac.broadinstitute.org/variant/17-78078341-T-G

      Variant2: NM_000152.3:c.2646_2647del

      CAID: CA913184745, http://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/by_caid?caid=CA913184745

      gnomAD: n/a

    1. 13

      Patient13: Male, 46yo at diagnosis, 47yo at ERT

      CasePresentingHPOs:

      HPOsFreeText: anti rh-GAA antibodies titre = 1:25,699, enzyme (μmol/g/h) = 0.52 (3-20)

      CaseNotHPOs:

      NotHPOsFreeText: NIV and mobility aid not required

      CaseAddInfo: 6yr disease duration, variants in trans

      CasePMIDs:

      CasePreviousTesting: same as group

      CaseGenotypingMethod: same as group

      Variant1: NM_000152.4(GAA):c.-32-13T>G

      Clinvar: 4027, https://www.ncbi.nlm.nih.gov/clinvar/variation/4027/

      gnomAD: 0.003582, http://exac.broadinstitute.org/variant/17-78078341-T-G

      Variant2: NM_000152.3:c.482_483del

      CAID: CA8814879, http://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/by_caid?caid=CA8814879

      gnomAD: 1.729e-05, http://exac.broadinstitute.org/variant/17-78078864-TCC-T

    2. 16

      Patient16: Female, 37yo at diagnosis and ERT

      CasePresentingHPOs:

      HPOsFreeText: anti rh-GAA antibodies titre = neg, enzyme (μmol/g/h) = 0.18 (3-20), mobility aid required before and after ERT

      CaseNotHPOs:

      NotHPOsFreeText: NIV not required

      CaseAddInfo: 21yr disease duration

      CasePMIDs:

      CasePreviousTesting: same as group

      CaseGenotypingMethod: same as group

      Variant: NM_000152.4(GAA):c.-32-13T>G

      Clinvar: 4027, https://www.ncbi.nlm.nih.gov/clinvar/variation/4027/

      gnomAD: 0.003582, http://exac.broadinstitute.org/variant/17-78078341-T-G