4,687 Matching Annotations
  1. Oct 2026
    1. distinct mutant IDUA alleles

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

      DiseaseAssertion: MPS1-H

      FamilyInfo: Parents belong to the same village

      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. 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

    3. 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. Case#: Patient M3, Muslim religious group, located in Gaza. The cells of the patient were listed in the catalog of the Human Genetic Mutant Cell Repository as "Hurler/Scheie". However, the patient at age 6 years had been described as having a typical MPS1-H phenotype except for apparently normal intelligence (measured across a language barrier).

      DiseaseAssertion: MPS1-H/S or MPS1-H

      FamilyInfo: Parents were found to have both mutations were found in heterozygous form in the DNA. Affected brother deceased at age 9.

      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.1225G>A (p.G409R)

      Variant1ClinVarID: 1084956

      Variant1CAID: CA91169920

      Variant2: (p.X654C)

      Variant2ClinVarID: N/A

      Variant2CAID: N/A

      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: L535F

      Variant1ClinVarID: 638076

      Variant1CAID: CA355965038

      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: N348K

      Variant1ClinVarID:

      Variant1CAID: CA355963142

      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: L238Q

      Variant1ClinVarID: 265418

      Variant1CAID: CA2802065

      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: V279A

      Variant1ClinVarID:

      Variant1CAID: CA355962380

      Variant2: N/A

      Variant2ClinVarID: N/A

      Variant2CAID: N/A

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished: N/A

    5. 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

    6. 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

    7. 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. 294

      Case#: Patient 29 (see Table 2), 40 weeks, 5 days (Gestational age)

      DiseaseAssertion: MPS1-S

      FamilyInfo: Sibling of Patient 28 (see Table 2)

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: Inguinal hernia (HP:0000023)

      CaseNotHPOFreeText: Upper respiratory tract involvement

      CaseEnzymeAssay: 1.61 nmol x mg-1 × hr-1

      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

    2. 201

      Case#: Patient 20 (see Table 2), 37 weeks, 1 day (Gestational age)

      DiseaseAssertion: MPS1-H/S

      FamilyInfo: Sibling of Patient 19 (see Table 2)

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: Inguinal hernia (HP:0000023)

      CaseNotHPOFreeText: Upper respiratory tract involvement

      CaseEnzymeAssay: 0.95 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.1044C>A (p.N348K)

      Variant2ClinVarID: N/A

      Variant2CAID: CA:355963142

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    3. 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

    4. 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

    5. 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

    6. 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

    7. 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

    1. 10/F

      Case#: Patient 10, female, Han origin, 2.5 years old (age at diagnosis)

      DiseaseAssertion: MPS1-H

      FamilyInfo: N/A

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

      CaseHPOFreeText: Cardiac disease

      CaseNotHPOs: Mongolian macula, Hernia (HP:0011369, HP:0100790)

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: IDUA activity 0.2 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.236C>T (p.A79V)

      Variant1ClinVarID: 1458769

      Variant1CAID: CA356987

      Variant2: c.536C>G (p.T179R)

      Variant2ClinVarID: 556358

      Variant2CAID: CA355961718

      AdditionalVariants: N/A

      ParentalGenotype: Father - c.236C>T, 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 in trans by parental testing.

      PreviouslyPublished N/A

    2. 11/M

      Case#: Patient 11, male, Han origin, 7 years old (age at diagnosis)

      DiseaseAssertion: MPS1-H/S

      FamilyInfo: N/A

      CasePresentingHPOs: Macrocephaly, Joint stiffness, Hepatosplenomegaly, Hernia, Airway obstruction (HP:0000256, HP:0001387, HP:0001433, HP:0100790, HP:0006536)

      CaseHPOFreeText: Cardiac disease

      CaseNotHPOs: Global Developmental Delay, Mongolian macula (HP:0001263, HP:0011369)

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: IDUA activity 0.1 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.236C>T (p.A79V)

      Variant1ClinVarID: 1458769

      Variant1CAID: CA234128

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

      Variant2ClinVarID: 1458769

      Variant2CAID: CA234128

      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 by parental testing.

      PreviouslyPublished N/A

    3. 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

    4. 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

    5. 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

    6. 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. 4

      Case#: Infant 4

      DiseaseAssertion: N/A

      FamilyInfo: Has an older sibling who is asymptomatic, has normal urine GAGs, and shares the same genotype.

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: 0.2 nmol/h/mg; normal range, 6-71.4 nmol/h/mg

      CaseUrineGAGs: 18.61 mg/mmol creatinine; normal ranges, 0-53 mg/mmol creatinine. Heparan sulfate was slightly elevated at 7.46 g/mol creatinine (normal, 0-5.71 g/mol creatinine) in 2 separate specimens.

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.720C>G (p.H240Q)

      Variant1ClinVarID: 1011483

      Variant1CAID: CA355962130

      Variant2: c.1112T>A (p.V371D)

      Variant2ClinVarID: 1470032

      Variant2CAID: CA355963356

      AdditionalVariants: N/A

      ParentalGenotype: c.720C>G (maternal); c.1112T>A (paternal)

      PreviouslyPublished N/A

    2. 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. 4

      Case#: Patient 4 was biochemically diagnosed with MPS I because they showed an increase in urinary GAGs and a reduction in IDUA activity in leukocytes. Patient 4 was diagnosed at 2 years and 7 months.

      DiseaseAssertion: MPSI-H/S

      FamilyInfo: N/A

      CasePresentingHPOs: Coarse facies, corneal clouding, hernias, skeletal abnormalities, cardiac abnormalities, and hepatosplenomegaly (HP:0000256, HP:0007957, HP:0100790, HP:0002360, HP:0001627, HP:0001433)

      CaseHPOFreeText: N/A

      CaseNotHPOs: Intellectual disability, growth delay (HP:0001249, HP:0001510)

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: IDUA activity of 6.5 nmol/mg/protein/hr. No reference range provided.

      CaseUrineGAGs: 202.8 CPC unit/g creatinine. No reference range provided.

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.236C>T (p.A79V)

      Variant1ClinVarID: 1458769

      Variant1CAID: CA356987

      Variant2: c.1882C>T (p.R628X)

      Variant2ClinVarID: 550421

      Variant2CAID: CA2802462

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. P4-IDUAFEuropeanItaly1.43.8IDUAc.246C > G/c.1716C > Gp.His82Gln/p.His572GlnMissenseMissensePseudo/VUS

      Case#: P4-IDUA, F, European, Italy DiseaseAssertion: MPS1 - Pseudo/VUS FamilyInfo: CasePresentingHPOs: CaseHPOFreeText: CaseNotHPOs: CaseNotHPOFreeText: CaseEnzymeAssay: NBS 1.4 triplex / 3.8 single CaseUrineGAGs: CaseERT: CaseBMT: Variant1: c.246C>G Variant1ClinVarID: 92637 Variant1CAID: CA220506 Variant2: c.1716C>G Variant2ClinVarID: 1431214 Variant2CAID: CA355965272 AdditionalVariants: ParentalGenotype: PreviouslyPublished

    2. P2-IDUAMNorth AfricaMorocco0.964.2IDUAc.246C > G/c.1757C > Tp.His82Gln/p.Ser586PheMissenseMissensePseudo/VUS

      Case#: P2-IDUA, M, North Africa, Morocco DiseaseAssertion: MPS1 - Psuedu/VUS FamilyInfo: CasePresentingHPOs: CaseHPOFreeText: CaseNotHPOs: CaseNotHPOFreeText: CaseEnzymeAssay: NBS 0.96 triplex / 4.2 single CaseUrineGAGs: CaseERT: CaseBMT: Variant1: c.246C>G Variant1ClinVarID: 92637 Variant1CAID: 92637 Variant2: c.1757C>T Variant2ClinVarID: 571910 Variant2CAID: CA2802396 AdditionalVariants: ParentalGenotype: PreviouslyPublished

    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.1042_1062dup

      Variant1ClinVarID: 2432708

      Variant1CAID: CA549264534

      Variant2: c.986A>G

      Variant2ClinVarID: N/A

      Variant2CAID: CA2802157

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    2. 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

    3. 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. 7

      Case#: Patient 7 (see Table 2), male, 15.1 years old (age at report), 6.9 years (duration of treatment), 6 surgeries

      DiseaseAssertion: MPS1-HS

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: HP:0000238, HP:0002176, HP:0002360 (Hydrocephalus, spinal cord compression, sleep abnormality)

      CaseNotHPOFreeText: Shunt placement, psychiatric problems

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: Yes

      CaseBMT: N/A

      Variant1: (p.G256R) Potential type error, p.G256R does not exist, possible should be p.G265R as seen in Patient 8.

      Variant1ClinVarID: N/A

      Variant1CAID: N/A

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

      Variant2ClinVarID: 11908

      Variant2CAID: CA220498

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    2. 12

      Case#: Patient 12 (see Table 2), female, 20.9 years old (age at report), 9.3 years (duration of treatment), 10 surgeries

      DiseaseAssertion: MPS1-HS

      FamilyInfo: N/A

      CasePresentingHPOs: HP:0002176 (Spinal cord compression)

      CaseHPOFreeText: N/A

      CaseNotHPOs: HP:0000238, HP:0002360 (Hydrocephalus, sleep abnormality)

      CaseNotHPOFreeText: Shunt placement

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: Yes

      CaseBMT: N/A

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

      Variant1ClinVarID: 11908

      Variant1CAID: CA220498

      Variant2: (Int11-7c>t) Current HGVS nomenclature is c.1651-7C>T

      Variant2ClinVarID: 1147380

      Variant2CAID: CA438057995

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. Hurler disease

      Case#: Patient 11, 4 years old (age at report), male, Indian

      DiseaseAssertion: MPS1-H

      FamilyInfo: Sibling of patient 10

      CasePresentingHPOs: Coarse facial features, recurrent infections, dysostosis multiplex, intellectual disability, hernia (HP:0000280, HP:0002719, HP:0000943, HP:0001249, HP:0100790)

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: 3.6% (Range of residual enzyme activity: 0.0%-4.8%)

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.531C>G (p.Phe177Leu)

      Variant1ClinVarID: 2432729

      Variant1CAID: CA2801983

      Variant2: c.531C>G (p.Phe177Leu)

      Variant2ClinVarID: 2432729

      Variant2CAID: CA2801983

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    2. Hurler disease

      Case#: Patient 39, 1 years old (age at report), male, Indian

      DiseaseAssertion: MPS1-H

      FamilyInfo: N/A

      CasePresentingHPOs: Joint contractures, dysostosis multiplex (HP:0002828, HP:0000943)

      CaseHPOFreeText: Cardiac disease

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: 3.4% (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

    3. Hurler disease

      Case#: Patient 53, 2 years old (age at report), male, Indian

      DiseaseAssertion: MPS1-H

      FamilyInfo: N/A

      CasePresentingHPOs: Coarse facial features, hepatosplenomegaly, corneal clouding, recurrent infections, intellectual disability, hernia (HP:0000280, HP:0001433, HP:0007957, HP:0002719, 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.502G>T (p.Gly168Ter)

      Variant1ClinVarID: N/A

      Variant1CAID: CA355961652

      Variant2: c.1402+1G>A

      Variant2ClinVarID: 555490

      Variant2CAID: CA355964379

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    4. Hurler disease

      Case#: Patient 19, 1 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, hernia (HP:0000280, HP:0001433, HP:0002828, HP:0007957, HP:0002719, HP:0000943, HP:0100790)

      CaseHPOFreeText: Cardiac disease

      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.784delC (p.His262Thrfs*55)

      Variant1ClinVarID: 956890

      Variant1CAID: CA2802083

      Variant2: c.784delC (p.His262Thrfs*55)

      Variant2ClinVarID: 956890

      Variant2CAID: CA2802083

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    5. 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

    6. 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. Patient 3

      Case#:3. 0.7 year Male, diagnosed at 0.4 years DiseaseAssertion:MPS1H FamilyInfo:NA CasePresentingHPOs:NA CaseHPOFreeText:NA CaseNotHPOs:NA CaseNotHPOFreeText:NA CaseEnzymeAssay:Undetectable CaseUrineGAGs:NA CaseERT:NA CaseBMT:Yes, Unrelated cord blood, Post HSCT 18.2 nmol/h/mg of protein ( α-l-Iduronidase Levels) Variant1:IDUA : c.178C>T Variant1ClinVarID:655054 Variant1CAID: Variant2:IDUA: c.1205G>A Variant2ClinVarID: 11908 Variant2CAID:CA220498 AdditionalVariants: ParentalGenotype: PreviouslyPublished

    1. Case#: Patient 3, 4 years old, Iranian

      DiseaseAssertion: MPS1-H (Severe)

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: IDUA activity not detected

      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. 5

      Case#: Patient No. 5 (Table 1), Black race, male, 2.84 years old (age at time of gene therapy), 77 IQ score, 2.18 years since gene therapy (2 years since latest visit). An acute hypersensitivity reaction that occurred in Patient 5 on day 12 after HSPC gene therapy and concomitantly to a first administration of vancomycin was considered by the investigators to be probably related to HSPC gene therapy. The event resolved promptly after treatment with antihistamines, intravenous fluids, and glucocorticoids, with no sequelae.

      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: Yes

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

      Variant1ClinVarID: 11908

      Variant1CAID: CA220498

      Variant2: c.1409delT (p.V470AfsX?)

      Variant2ClinVarID: N/A

      Variant2CAID: N/A

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. 12/F

      Case#: 12, Female, 5 months (onset), 5 years (diagnosed), 5 years (report), deceased (at 7y)

      DiseaseAssertion: Hurler Syndrome

      FamilyInfo: Not Provided

      CasePresentingHPOs: HP:0004322, HP:0000256, HP:0001387, HP:0002240, HP:0001744, HP:0001537, HP:0000365, HP:0000280, HP:0000943, HP:0007957 (Short Stature, Macrocephaly, Joint Stiffness, Hepatomegaly (Severe), Splenomegaly (moderate), Umbilical Hernia, Deafness (progressive), Coarse Facial Features, Dysostosis Multiplex, Corneal Clouding)

      CaseHPOFreeText: Mental Development (Delayed)

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      GenotypingMethod: Not Provided

      Variant1: p.Q70X

      Variant1ClinVarID: 11909

      Variant1CAID: CA204563

      Variant2: p.D315Y

      Variant2ClinVarID: N/A

      Variant2CAID: CA355962740

      AdditionalVariants: p.A8, p.A20, p.Q33H, p.L118

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    2. 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

    3. 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. 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. c.1709A>T

      Case#: Functional assay variant with a clinical significance of being likely pathogenic.

      DiseaseAssertion: MPS-I

      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.1709A>T (p.D570V)

      Variant1ClinVarID: 1980496

      Variant1CAID: CA355965255

      Variant2: N/A

      Variant2ClinVarID: N/A

      Variant2CAID: N/A

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    2. c.757G>T

      Case#: Functional assay variant with a clinical significance of having conflicting interpretations.

      DiseaseAssertion: MPS-I

      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.757G>T (p.G253C)

      Variant1ClinVarID: 554213

      Variant1CAID: CA2802076

      Variant2: N/A

      Variant2ClinVarID: N/A

      Variant2CAID: N/A

      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. 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. 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

    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. 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. 204

      Case#: 204 14.8 yrs male, age at initial diagnosis 5 yrs DiseaseAssertion: MPS IH-S FamilyInfo:Nil CasePresentingHPOs: CaseHPOFreeText: CaseNotHPOs: CaseNotHPOFreeText: CaseEnzymeAssay: IDUA activity: low leukocyte IDUA enzyme activity CaseUrineGAGs: CaseERT: 9 yrs on ERT, then study drug, valanafusp alpha, also called AGT-181 for 12 months

      CaseBMT: No PreviouslyPublished Don't know Variant1:p.R48del Variant1ClinVarID: 1518010 Variant1CAID: Variant2:p.P533R Variant2ClinVarID: 11910 Variant2CAID: CA256112

    2. 105

      Case#: Pt 105 , Age 30 years, Female, DiseaseAssertion: MPS1 Scheie syndrome. FamilyInfo: NA CasePresentingHPOs: NA CaseHPOFreeText: NA CaseNotHPOs: NA CaseNotHPOFreeText: NA

      CaseEnzymeAssay: Low leukocyte IDUA enzyme activity CaseUrineGAGs: NA CaseERT: No CaseBMT: No Variant1: p.R383H Variant1ClinVarID: 558189 Variant1CAID: Variant2:p.W402X Variant2ClinVarID: 11908 Variant2CAID: CA220498 AdditionalVariants: NA ParentalGenotype: NA PreviouslyPublished:NA

    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. 10

      Case#:Subject 10 : 23 years male, age of onset unknown DiseaseAssertion:MPS1 FamilyInfo:NA CasePresentingHPOs:NA CaseHPOFreeText:recieved Zinc-finger nuclease(ZFN) based in vivo genome editing as part of Study SB-318-1502, one time IV administration.Monitored by Iduronidase enzyme levels and Urine Heparan sulfate levels durinng enzyme withdrawal. ERt recommenced later. CaseNotHPOs:NA CaseNotHPOFreeText:NA CaseEnzymeAssay:Iduronidase 1.20 nmol/mL/h (normal: 6–71.4 nmol/h/mg) CaseUrineGAGs: CaseERT: <br /> CaseBMT:NA Variant1: IDUA c.386-2A>G Variant1ClinVarID: 222994 Variant1CAID: CA356991 Variant2: IDUA c.1898C>T Variant2ClinVarID: 556406 Variant2CAID: AdditionalVariants:NA ParentalGenotype:NA PreviouslyPublishedNA

  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. 310.423 (5.1)7.9DS 2.7heterozygous PD: c.235G>A; p.A79TNot examined at UNC-CHHS 2.5heterozygous PD: c.296C>T; p.T99Iheterozygous PD: c.667G>A; p.D223N

      Case#:Patient Sample unique ID 31, Infant screened positive at birth (specimens with activity ≤15% of the DMA for enzyme activity and a CLIR screening algorithm result of indeterminate or MPS I)

      DiseaseAssertion:None

      FamilyInfo:None

      CasePresentingHPOs:None

      CaseHPOFreeText:None

      CaseNotHPOs:None

      CaseNotHPOFreeText: Normal examination at follow up after screening positive at birth (specimens with activity ≤15% of the DMA for enzyme activity and a CLIR screening algorithm result of indeterminate or MPS I)

      CaseEnzymeAssay: IDUA activity 0.423 (7.9) umol/L/h (%DMA) during new born screening through dried blood spot (plasma) and 7.9 pmol/punch/h Confirmatory IDUA enzyme

      CaseUrineGAGs: DS 2.7 g/mol creatinine and HS 2.5 g/mol creatinine (Normal)

      CaseERT:No

      CaseBMT:No

      Variant1:homozygous PD: c.235G>A; p.A79T (Normal examination)

      Variant1ClinVarID:41682

      Variant1CAID: CA000358

      Variant2: homozygous PD: c.296C>T; p.T99I

      Variant2ClinVarID:53610

      Variant2CAID:CA326991

      AdditionalVariants:None

      ParentalGenotype:None provided

      PreviouslyPublished:N/A

    2. 580.413 (5.3)8.7N/A§heterozygous PD: c.235G>A; p.A79TNormal examinationheterozygous PD: c.296C>T; p.T99Iheterozygous PD: c.667G>A; p.D223N

      Case#:Patient Sample unique ID 58, Infant screened positive at birth (specimens with activity ≤15% of the DMA for enzyme activity and a CLIR screening algorithm result of indeterminate or MPS I)

      DiseaseAssertion:None

      FamilyInfo:None

      CasePresentingHPOs:None

      CaseHPOFreeText:None

      CaseNotHPOs:None

      CaseNotHPOFreeText: Normal examination at follow up after screening positive at birth (specimens with activity ≤15% of the DMA for enzyme activity and a CLIR screening algorithm result of indeterminate or MPS I)

      CaseEnzymeAssay: IDUA activity 0.413 (8.7) umol/L/h (%DMA) during new born screening through dried blood spot (plasma) and 8.7 pmol/punch/h Confirmatory IDUA enzyme

      CaseUrineGAGs: N/A (Family refused to collect additional urine specimen.)

      CaseERT:No

      CaseBMT:No

      Variant1:homozygous PD: c.235G>A; p.A79T (Normal examination)

      Variant1ClinVarID:41682

      Variant1CAID: CA000358

      Variant2: homozygous PD: c.296C>T; p.T99I

      Variant2ClinVarID:53610

      Variant2CAID:CA326991

      AdditionalVariants: heterozygous PD: c.667G>A; p.D223N (ClinVarID: 2220838, CAID: CA363422841)

      ParentalGenotype:None provided

      PreviouslyPublished:N/A

    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. 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. 97 10 F 45 c.7604G.Ap.R2535Q Hmz 9 2.3 6 - -

      Case: 97, F, 10 years, Indian

      DiseaseAssertion: VWD type 3

      FamilyInfo: no family history of disease, Consanguinity: no

      ParentalGenotype: n/a

      CasePresentingHPOs: n/a

      CaseHPOFreeText: FVIII:C: (U/dl): 9, VWF:Ag (U/dl): 2.3, Bleeding Score: 6

      CaseNotHPOs: n/a

      CaseNotHPOFreeText: n/a

      CasePreviousTesting: n/a

      Gene: VWF

      Variant:

      c.7604G>A (p.Arg2535Gln), Exon 45

      Homozygous

    2. 19 1.3 F 45 c.7725_7729delCTGTGp.R2575_E2577del Htz 3.6 1 4 + -

      Case: 19, F, 1.3 years, Indian

      DiseaseAssertion: VWD type 3

      FamilyInfo:family history of disease, Consanguinity: no

      ParentalGenotype: n/a

      CasePresentingHPOs: n/a

      CaseHPOFreeText: FVIII:C: (U/dl): 3.6, VWF:Ag (U/dl): 1, Bleeding Score: 4

      CaseNotHPOs: n/a

      CaseNotHPOFreeText: n/a

      CasePreviousTesting: n/a

      Gene: VWF

      Variant:

      c.7725_7729delCTGTG (p.Arg2575_Glu2577del), Exon 45, Heterozygous

    3. 10 42 M 20 c.2560C.T p.R854W Htz ,1 ,1 34 + -

      Case: 10, M, 42 years, Indian

      DiseaseAssertion: VWD type 3

      FamilyInfo: family history of disease, Consanguinity: no

      ParentalGenotype: n/a

      CasePresentingHPOs: n/a

      CaseHPOFreeText: FVIII:C: (U/dl): <1, VWF:Ag (U/dl): <1, Bleeding Score: 34

      CaseNotHPOs: n/a

      CaseNotHPOFreeText: n/a

      CasePreviousTesting: n/a

      Gene: VWF

      Variant:

      c.2560C>T (p.Arg854Trp), Exon 20

      Heterozygous

    4. 48 2.5 M 19 c.2443-1G.C Hmz 2.5 ,1 6 - -

      Case: 48, M, 2.5 years, Indian

      DiseaseAssertion: VWD type 3

      FamilyInfo: no family history of disease, Consanguinity: no

      ParentalGenotype: n/a

      CasePresentingHPOs: n/a

      CaseHPOFreeText: FVIII:C: (U/dl): 2.5, VWF:Ag (U/dl): <1, Bleeding Score: 6

      CaseNotHPOs: n/a

      CaseNotHPOFreeText: n/a

      CasePreviousTesting: n/a

      Gene: VWF

      Variant:

      c.2443-1G>C, Exon 19

      Homozygous

    5. 87 16 F 28 c.5001G.Cp.Q1667H Hmz ,1 5.3 12 - +

      Case: 87, F, 16 years, Indian

      DiseaseAssertion: VWD type 3

      FamilyInfo: no family history of disease, Consanguinity: yes

      ParentalGenotype: n/a

      CasePresentingHPOs: n/a

      CaseHPOFreeText: FVIII:C: (U/dl): <1, VWF:Ag (U/dl): 5.3, Bleeding Score: 12

      CaseNotHPOs: n/a

      CaseNotHPOFreeText: n/a

      CasePreviousTesting: n/a

      Gene: VWF

      Variant:

      c.5001G>C (p.Gln1667His), Exon 28

      Homozygous

    6. 64 2 M 28 c.3835G.A p.V1279I Hmz 5.2 ,1 6 - +c.3931C.T p.Q1311*

      Case: 64, M, 2 years, Indian

      DiseaseAssertion: VWD type 3

      FamilyInfo: no family history of disease, Consanguinity: yes

      ParentalGenotype: n/a

      CasePresentingHPOs: n/a

      CaseHPOFreeText: FVIII:C: (U/dl): 5.2, VWF:Ag (U/dl): <1, Bleeding Score: 6

      CaseNotHPOs: n/a

      CaseNotHPOFreeText: n/a

      CasePreviousTesting: n/a

      Gene: VWF

      Variant:

      c.3835G>A (p.Val1279Ile), Exon 28

      c.3931C>T (p.Gln1311*), Exon 28

      Homozygous

    7. 26 13 M 37 c.6418C.Tp.Q2140* Hmz ,1 ,1 8 + -

      Case: 26, M, 13 years, Indian

      DiseaseAssertion: VWD type 3

      FamilyInfo: Consanguinity: no, family history of disease

      ParentalGenotype: n/a

      CasePresentingHPOs: n/a

      CaseHPOFreeText: FVIII:C: (U/dl): <1, VWF:Ag (U/dl): <1, Bleeding Score: 8

      CaseNotHPOs: n/a

      CaseNotHPOFreeText: n/a

      CasePreviousTesting: n/a

      Gene: VWF

      Variant:

      c.6418C>T (p.Gln2140*), Exon 37, Homozygous

    8. 31 16 F 8 c.903T.Ap.Y301* C. 6.5 4 6 - +22 c.2878C.T,c.2880G.Ap.R960* Htz

      Case: 31, F, 16 years, Indian

      DiseaseAssertion: VWD type 3

      FamilyInfo: Consanguinity: yes, no family history of disease

      ParentalGenotype: n/a

      CasePresentingHPOs: n/a

      CaseHPOFreeText: FVIII:C: (U/dl): 6.5, VWF:Ag (U/dl): 4, Bleeding Score: 6

      CaseNotHPOs: n/a

      CaseNotHPOFreeText: n/a

      CasePreviousTesting: n/a

      Gene: VWF

      Variant:

      c.903T>A (p.Tyr301*), Exon 8

      c.2878C>T, c.2880G>A (p.Arg960*), Exon 22

      Compound Heterozygous

    9. 69 1.5 F 34 c.5793G.Cp.Q1931H Hmz ,1 ,1 2 - -

      Case: 69, F, 1.5 years, Indian

      DiseaseAssertion: VWD type 3

      FamilyInfo: no family history of disease, Consanguinity: no

      ParentalGenotype: n/a

      CasePresentingHPOs: n/a

      CaseHPOFreeText: FVIII:C: (U/dl): <1, VWF:Ag (U/dl): <1, Bleeding Score: 2

      CaseNotHPOs: n/a

      CaseNotHPOFreeText: n/a

      CasePreviousTesting: n/a

      Gene: VWF

      Variant:

      c.5793G>C (p.Gln1931His), Exon 34

      Homozygous

    10. 81 16 M 15 c.1863C.Ap.C621* Hmz 2 4.2 6 - -

      Case: 81, M, 16 years, Indian

      DiseaseAssertion: VWD type 3

      FamilyInfo: Consanguinity: no, no family history of disease

      ParentalGenotype: n/a

      CasePresentingHPOs: n/a

      CaseHPOFreeText: FVIII:C: (U/dl): 2, VWF:Ag (U/dl): 4.2, Bleeding Score: 6

      CaseNotHPOs: n/a

      CaseNotHPOFreeText: n/a

      CasePreviousTesting: n/a

      Gene: VWF

      Variant:

      c.1863C>A (p.Cys621*), Exon 15, Homozygous

    11. 2 32 F 8 c.970C.T p.R324* Hmz 1 ,1 22 + -

      Case: 2, F, 32 years, Indian

      DiseaseAssertion: VWD type 3

      FamilyInfo: Consanguinity: no, family history of disease

      ParentalGenotype: n/a

      CasePresentingHPOs: n/a

      CaseHPOFreeText: FVIII:C: (U/dl): 1, VWF:Ag (U/dl): 1, Bleeding Score: 22

      CaseNotHPOs: n/a

      CaseNotHPOFreeText: n/a

      CasePreviousTesting: n/a

      Gene: VWF

      Variant:

      c.970C>T (p.Arg324*), Exon 8, Homozygous

    12. 28 4 M 45 c.7558C.T p.Q2520* Hmz 3.2 3.2 7 + -

      Case: 28, M, 4 years, Indian

      DiseaseAssertion: VWD type 3

      FamilyInfo: Consanguinity: no, family history of disease

      ParentalGenotype: n/a

      CasePresentingHPOs: n/a

      CaseHPOFreeText: FVIII:C: (U/dl): 3.2, VWF:Ag (U/dl): 3.2, Bleeding Score: 7

      CaseNotHPOs: n/a

      CaseNotHPOFreeText: n/a

      CasePreviousTesting: n/a

      Gene: VWF

      Variant:

      c.7558C>T (p.Gln2520* ), Exon 45, Homozygous

    13. 72 6 F 8 c.901_902insCTAp.E300_R302insSN Htz 2.5 4 4 - -

      Case: 72, F, 6 years, Indian

      DiseaseAssertion: VWD type 3

      FamilyInfo: no family history of disease, Consanguinity: no

      ParentalGenotype: n/a

      CasePresentingHPOs: n/a

      CaseHPOFreeText: FVIII:C: (U/dl): 2.5, VWF:Ag (U/dl): 4, Bleeding Score: 4

      CaseNotHPOs: n/a

      CaseNotHPOFreeText: n/a

      CasePreviousTesting: n/a

      Gene: VWF

      Variant:

      c.901_902insCTA (p.Glu300_Arg302insSerAsn), Exon 8

      Heterozygous

    14. 19 1.3 F 45 c.7603C.T p.R2535* Htz 3.6 1 4 + -

      Case: 19, F, 1.3 years, Indian

      DiseaseAssertion: VWD type 3

      FamilyInfo: Consanguinity: no, family history of disease

      ParentalGenotype: n/a

      CasePresentingHPOs: n/a

      CaseHPOFreeText: FVIII:C: (U/dl): 3.6, VWF:Ag (U/dl): 1, Bleeding Score: 4

      CaseNotHPOs: n/a

      CaseNotHPOFreeText: n/a

      CasePreviousTesting: n/a

      Gene: VWF

      Variant:

      c.7603C>T (p.Arg2535*), Exon 45, Heterozygous

    1. 38 Type2A(IIA)c.4589T>GN p.Val1530Gly 28 A2 htz Missense na 30 na na

      Case: IP #38 (also in row 18 table 6)

      DiseaseAssertion: type 2A (IIA) VWD

      FamilyInfo:

      ParentalGenotype(s):

      CasePresentingHPOs:

      CaseHPOFreeRext:

      CaseNOTHPOs:

      CaseNOTHPOFreeText:

      CasePreviousTesting:

      GenotypingMethod: Sequence variations in the VWF were identified through direct sequencing, while the detection of large rearrangements utilized the multiplex ligation-dependent probe amplification (MLPA) technique or assessed copy number variations (CNVs). Sanger sequencing methodology was applied for VWF analysis in patients investigated prior to 2016 (approximately 14% of IPs), whereas next-generation sequencing (NGS) was employed for the analysis of VWF in patients inspected from 2017 onwards (about 86% of IPs). In both strategies, the entire VWF, encompassing all 52 exons, intron/exon boundaries, and promoter regions, was analyzed.

      PreviouslyPublished:

      Gene: VWF

      Variant: c.4589T>G p.Val1530Gly

      HGVS:

      ClinVarID: not found

      CAID: CA383501045

      gnomAD: absent

    2. 10-12Type2A (IIE)c.3296G>AN p.Cys1099Tyr 25 D3-C8-3htz Missense O/na/A131/na/26532/na/44 117OSCA/na

      Case: IP #11 (also in row 6 table 6)

      DiseaseAssertion: type 2A (IIE) VWD

      FamilyInfo:

      ParentalGenotype(s):

      CasePresentingHPOs:

      CaseHPOFreeRext:

      CaseNOTHPOs:

      CaseNOTHPOFreeText:

      CasePreviousTesting:

      GenotypingMethod: Sequence variations in the VWF were identified through direct sequencing, while the detection of large rearrangements utilized the multiplex ligation-dependent probe amplification (MLPA) technique or assessed copy number variations (CNVs). Sanger sequencing methodology was applied for VWF analysis in patients investigated prior to 2016 (approximately 14% of IPs), whereas next-generation sequencing (NGS) was employed for the analysis of VWF in patients inspected from 2017 onwards (about 86% of IPs). In both strategies, the entire VWF, encompassing all 52 exons, intron/exon boundaries, and promoter regions, was analyzed.

      PreviouslyPublished:

      Gene: VWF

      Variant: c.3296G>A p.Cys1099Tyr

      HGVS:

      ClinVarID: not found

      CAID: CA383512195

      gnomAD: absent

    3. 51-54Type2A(IIA)c.4811T>AN p.Val1604Asp 28 A2 htz Missense O/A/O/O27/24/35/328/9/11/755CSA/57

      Case: IP #52 (also in row 21 table 6)

      DiseaseAssertion: type 2A (IIA) VWD

      FamilyInfo:

      ParentalGenotype(s):

      CasePresentingHPOs: HP:0032370 - blood group A

      CaseHPOFreeRext: VWF:Ag [IU/dL] = 24; VWF:Ac [IU/dL] = 9; FVIII:C [IU/dL] = 57

      CaseNOTHPOs:

      CaseNOTHPOFreeText:

      CasePreviousTesting:

      GenotypingMethod: Sequence variations in the VWF were identified through direct sequencing, while the detection of large rearrangements utilized the multiplex ligation-dependent probe amplification (MLPA) technique or assessed copy number variations (CNVs). Sanger sequencing methodology was applied for VWF analysis in patients investigated prior to 2016 (approximately 14% of IPs), whereas next-generation sequencing (NGS) was employed for the analysis of VWF in patients inspected from 2017 onwards (about 86% of IPs). In both strategies, the entire VWF, encompassing all 52 exons, intron/exon boundaries, and promoter regions, was analyzed.

      PreviouslyPublished:

      Gene: VWF

      Variant: c.4811T>A p.Val1604Asp

      HGVS:

      ClinVarID: not found

      CAID: CA383499144

      gnomAD: absent

    4. 58 Type2A(IIA)c.4880C>GN p.Pro1627Arg 28 A2 htz Missense O 19 4 21

      Case: IP #58 (also in row 22 table 6)

      DiseaseAssertion: type 2A (IIA) VWD

      FamilyInfo:

      ParentalGenotype(s):

      CasePresentingHPOs: HP:0032442 - blood group O

      CaseHPOFreeRext: VWF:Ag [IU/dL] = 19; VWF:Ac [IU/dL] = 4; FVIII:C [IU/dL] = 21

      CaseNOTHPOs:

      CaseNOTHPOFreeText:

      CasePreviousTesting:

      GenotypingMethod: Sequence variations in the VWF were identified through direct sequencing, while the detection of large rearrangements utilized the multiplex ligation-dependent probe amplification (MLPA) technique or assessed copy number variations (CNVs). Sanger sequencing methodology was applied for VWF analysis in patients investigated prior to 2016 (approximately 14% of IPs), whereas next-generation sequencing (NGS) was employed for the analysis of VWF in patients inspected from 2017 onwards (about 86% of IPs). In both strategies, the entire VWF, encompassing all 52 exons, intron/exon boundaries, and promoter regions, was analyzed.

      PreviouslyPublished:

      Gene: VWF

      Variant: c.4880C>G p.Pro1627Arg

      HGVS:

      ClinVarID: not found

      CAID: CA383498774

      gnomAD: absent

    5. 4 c.4037A > C N p.Gln1346Pro 28 A1 htz Missense O 20 5 22 CSA 20

      Case: IP #4 in type 2M VWD sub-cohort (also in row 13 table 6)

      DiseaseAssertion: type 2M VWD

      FamilyInfo:

      ParentalGenotype(s):

      CasePresentingHPOs:

      CaseHPOFreeRext: VWF:Ag [IU/dL] = 20; VWF:Ac [IU/dL] = 5; FVIII:C [IU/dL] = 22; VWF:CB (IU/dL) = 20

      CaseNOTHPOs:

      CaseNOTHPOFreeText:

      CasePreviousTesting:

      GenotypingMethod: Sequence variations in the VWF were identified through direct sequencing, while the detection of large rearrangements utilized the multiplex ligation-dependent probe amplification (MLPA) technique or assessed copy number variations (CNVs). Sanger sequencing methodology was applied for VWF analysis in patients investigated prior to 2016 (approximately 14% of IPs), whereas next-generation sequencing (NGS) was employed for the analysis of VWF in patients inspected from 2017 onwards (about 86% of IPs). In both strategies, the entire VWF, encompassing all 52 exons, intron/exon boundaries, and promoter regions, was analyzed.

      PreviouslyPublished:

      Gene: VWF

      Variant: c.4037A>C p.Gln1346Pro

      HGVS:

      ClinVarID: not found

      CAID: CA383505695

      gnomAD: absent

    6. 22 Type2A (IIE)c.3518G>T p.Cys1173Phe 26 D3-TIL-3htz Missense na 23 16 37

      Case: IP #22

      DiseaseAssertion: type 2A (IIE) VWD

      FamilyInfo:

      ParentalGenotype(s):

      CasePresentingHPOs:

      CaseHPOFreeRext: VWF:Ag [IU/dL] = 23; VWF:Ac [IU/dL] = 16; FVIII:C [IU/dL] = 37

      CaseNOTHPOs:

      CaseNOTHPOFreeText:

      CasePreviousTesting:

      GenotypingMethod: Sequence variations in the VWF were identified through direct sequencing, while the detection of large rearrangements utilized the multiplex ligation-dependent probe amplification (MLPA) technique or assessed copy number variations (CNVs). Sanger sequencing methodology was applied for VWF analysis in patients investigated prior to 2016 (approximately 14% of IPs), whereas next-generation sequencing (NGS) was employed for the analysis of VWF in patients inspected from 2017 onwards (about 86% of IPs). In both strategies, the entire VWF, encompassing all 52 exons, intron/exon boundaries, and promoter regions, was analyzed.

      PreviouslyPublished:

      Gene: VWF

      Variant: c.3518G>T p.Cys1173Phe

      HGVS:

      ClinVarID: not found

      CAID: CA383511188

      gnomAD: absent

    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#: 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

    6. 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

    7. 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

    8. 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

    9. 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

    10. 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. I : 1

      Case#: F7, I:1

      DiseaseAssertion: Type 2 VWD

      CaseHPOFreeText: partial loss of high molecular weight multimers, VWF:Ag = 88; VWF:RCo = 46; VWF:GPIbM = 81; 0.52; 0.93; 1.77

      CasePreviousTesting: Not clearly described

      Gene: VWF

      Variant: p.[I1309V];[=]

      HGVS: c.3925A>G (p.Ile1309Val)

      CAID: CA228492

      gnomAD: absent from gnomad v4.1.0

    2. I : 1

      Case#: F6, I:1

      DiseaseAssertion: Type 2 VWD

      CaseHPOFreeText: partial loss of high molecular weight multimers, VWF:Ag = 56; VWF:RCo = 29; VWF:GPIbM = 75; 0.51; 1.34; 2.63

      CasePreviousTesting: Not clearly described

      Gene: VWF

      Variant: p.[H1268D];[=]

      HGVS: c.3802C>G (p.His1268Asp)

      CAID: CA228445

      gnomAD: absent from gnomad v4.1.0

    3. I : 1

      Case#: F20, I:1

      DiseaseAssertion: Type 2 VWD

      CaseHPOFreeText: loss of high and intermediate MWMs, VWF:Ag = 34; VWF:RCo = 8; VWF:GPIbM = 23; 0.22; 0.68; 3.08

      CasePreviousTesting: Not clearly described

      Gene: VWF

      Variant: p.[V1316M];[=]

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

      CAID: CA114127

      gnomAD: absent from gnomad v4.1.0

    4. II : 1

      Case#: F5, II:1

      DiseaseAssertion: Type 2 VWD

      CaseHPOFreeText: all mutimers present, VWF:Ag = 56; VWF:RCo = 48; VWF:GPIbM = 49; 0.86; 0.87; 1.01

      CasePreviousTesting: Not clearly described

      Gene: VWF

      Variant: p.[I1372S];[=]

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

      CAID: CA228535

      gnomAD: https://gnomad.broadinstitute.org/variant/12-6019303-A-C?dataset=gnomad_r4

    5. I : 1

      Case#: F19, I:1

      DiseaseAssertion: Type 2 VWD

      CaseHPOFreeText: loss of high and intermediate MWMs, VWF:Ag = 35; VWF:RCo = 5; VWF:GPIbM = 28; 0.14; 0.81; 5.68

      CasePreviousTesting: Not clearly described

      Gene: VWF

      Variant: p.[V1316M];[=]

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

      CAID: CA114127

      gnomAD: absent from gnomad v4.1.0

    6. I : 1

      Case#: F5, I:1

      DiseaseAssertion: Type 2 VWD

      CaseHPOFreeText: all mutimers present, VWF:Ag = 105; VWF:RCo = 90; VWF:GPIbM = 87; 0.86; 0.82; 0.96

      CasePreviousTesting: Not clearly described

      Gene: VWF

      Variant: p.[I1372S];[=]

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

      CAID: CA228535

      gnomAD: https://gnomad.broadinstitute.org/variant/12-6019303-A-C?dataset=gnomad_r4

    7. I : 1

      Case#: F18, I:1

      DiseaseAssertion: Type 2 VWD

      CaseHPOFreeText: loss of high and intermediate MWMs, VWF:Ag = 95; VWF:RCo = 30; VWF:GPIbM = 70; 0.32; 0.73; 2.31

      CasePreviousTesting: Not clearly described

      Gene: VWF

      Variant: p.[R1308C];[=]

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

      CAID: CA114125

      gnomAD: absent from gnomad v4.1.0

    8. I : 1

      Case#: F17, I:1

      DiseaseAssertion: Type 2 VWD

      CaseHPOFreeText: loss of high and intermediate MWMs, VWF:Ag = 30; VWF:RCo = 8; VWF:GPIbM = 23; 0.27; 0.75; 2.81

      CasePreviousTesting: Not clearly described

      Gene: VWF

      Variant: p.[R1308C];[=]

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

      CAID: CA114125

      gnomAD: absent from gnomad v4.1.0

    9. I : 1

      Case#: F16, I:1

      DiseaseAssertion: Type 2 VWD

      CaseHPOFreeText: loss of high and intermediate MWMs, VWF:Ag = 48; VWF:RCo = 13; VWF:GPIbM = 48; 0.27; 1.00; 3.65

      CasePreviousTesting: Not clearly described

      Gene: VWF

      Variant: p.[R1308C];[=]

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

      CAID: CA114125

      gnomAD: absent from gnomad v4.1.0

    10. I : 1

      Case#: F15, I:1

      DiseaseAssertion: Type 2 VWD

      CaseHPOFreeText: loss of high and intermediate MWMs, VWF:Ag = 43; VWF:RCo = 12; VWF:GPIbM = 30; 0.28; 0.70; 2.56

      CasePreviousTesting: Not clearly described

      Gene: VWF

      Variant: p.[R1308C];[=]

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

      CAID: CA114125

      gnomAD: absent from gnomad v4.1.0

    11. II : 2

      Case#: F14, II:2

      DiseaseAssertion: Type 2 VWD

      CaseHPOFreeText: loss of high and intermediate MWMs, VWF:Ag = 12; VWF:RCo = 3; VWF:GPIbM = 9; 0.21; 0.71; 3.31

      CasePreviousTesting: Not clearly described

      Gene: VWF

      Variant: p.[C275R];[P1337L]

      HGVS: c.823T>C (p.Cys275Arg), c.4010C>T (p.Pro1337Leu)

      CAID: CA228836, CA228510

      gnomAD: absent from gnomad, https://gnomad.broadinstitute.org/variant/12-6019408-G-A?dataset=gnomad_r4

    1. 22*IranF/361—YesSevere4975C→TR1659X28HomozygousDdeI (+)

      Case: 22, F, 36, Iranian

      DiseaseAssertion: VWD type 3

      FamilyInfo: Consanguinity: Yes

      ParentalGenotype: n/a

      CasePresentingHPOs: n/a

      CaseHPOFreeText: VWF:Ag (U/dl): 1, Bleeding symptoms: Severe

      CaseNotHPOs: n/a

      CaseNotHPOFreeText: Anti-VWF alloantibodies: no

      CasePreviousTesting: n/a

      Gene: VWF

      Variant:

      4975C→T (Arg1659X), Exon 28, Homozygous

    2. 14*IranF/262—YesSevere652C→TQ218X6HomozygousN.A.

      Case: 14, F, 26, Iranian

      DiseaseAssertion: VWD type 3

      FamilyInfo: Consanguinity: Yes

      ParentalGenotype: n/a

      CasePresentingHPOs: n/a

      CaseHPOFreeText: VWF:Ag (U/dl): 2, Bleeding symptoms: Severe

      CaseNotHPOs: n/a

      CaseNotHPOFreeText: Anti-VWF alloantibodies: no

      CasePreviousTesting: n/a

      Gene: VWF

      Variant:

      652C→T (Gln218X), Exon 6, Homozygous

    3. 33IndiaF/24<1—YesMild7137insTFS42HomozygousN.A.

      Case: 33, F, 24, Indian

      DiseaseAssertion: VWD type 3

      FamilyInfo: Consanguinity: Yes

      ParentalGenotype: n/a

      CasePresentingHPOs: n/a

      CaseHPOFreeText: VWF:Ag (U/dl): <1, Bleeding symptoms: Mild

      CaseNotHPOs: n/a

      CaseNotHPOFreeText: Anti-VWF alloantibodies: no

      CasePreviousTesting: n/a

      Gene: VWF

      Variant:

      7137insT (FS), Exon 42, Homozygous

    4. 38IndiaF/25<1—NoMild3379+1G→A/4414insCFS/FS25/28HeterozygousNlaIII (+)/N.A.

      Case: 38, F, 25, Indian

      DiseaseAssertion: VWD type 3

      FamilyInfo: Consanguinity: No

      ParentalGenotype: n/a

      CasePresentingHPOs: n/a

      CaseHPOFreeText: VWF:Ag (U/dl): <1, Bleeding symptoms: Mild

      CaseNotHPOs: n/a

      CaseNotHPOFreeText: Anti-VWF alloantibodies: no

      CasePreviousTesting: n/a

      Gene: VWF

      Variant:

      3379+1G→A (intronic), Exon 25

      4414insC (FS), Exon 28

      Compound Heterozygous

      Note: The authors assume that 3379+1G→A causes a frameshift mutation. No potential splice site mutation was confirmed at the mRNA level; “Splice Site Prediction program” found all mutations likely to disrupt normal splicing. No possible splice site mutation could be identified on 100 chromosomes from a group of 50 normal subjects with same genetic background as patients, excluding the possibility that these mutations represent common polymorphisms.

    5. 23IranM/16<1—YesSevere5941G→TE1981X35HomozygousN.A.

      Case: 23, M, 16, Iranian

      DiseaseAssertion: VWD type 3

      FamilyInfo: Consanguinity: Yes

      ParentalGenotype: n/a

      CasePresentingHPOs: n/a

      CaseHPOFreeText: VWF:Ag (U/dl): <1, Bleeding symptoms: Severe

      CaseNotHPOs: n/a

      CaseNotHPOFreeText: Anti-VWF alloantibodies: no

      CasePreviousTesting: n/a

      Gene: VWF

      Variant:

      5941G→T (Glu1981X), Exon 35, Homozygous

    6. 15IranF/18<1—YesMild788del24263del87HomozygousRsaI (+)

      Case: 15, F, 18, Iranian

      DiseaseAssertion: VWD type 3

      FamilyInfo: Consanguinity: Yes

      ParentalGenotype: n/a

      CasePresentingHPOs: n/a

      CaseHPOFreeText: VWF:Ag (U/dl): <1, Bleeding symptoms: Mild

      CaseNotHPOs: n/a

      CaseNotHPOFreeText: Anti-VWF alloantibodies: no

      CasePreviousTesting: n/a

      Gene: VWF

      Variant:

      788del24 (263del8), Exon 7, Homozygous

    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

    1. T001

      Case: T001, M, 42

      DiseaseAssertion: VWD type 3

      FamilyInfo: n/a

      CasePresentingHPOs: n/a

      CaseHPOFreeText: Bleeding Score: 19 (Kruskal–Wallis followed by Mann–Whitney U post-hoc testing Post-hoc testing ), VWF:Ag (IU/ml): 0.01, VWF:RCo (IU/ml): 0.02, FVIII:C (IU/ml) : 0.02

      CaseNotHPOs: n/a

      CaseNotHPOFreeText: n/a

      CasePreviousTesting: n/a

      Gene: VWF

      Variant:

      c.221-977_532 + 7059del (p.Asp75_Gly178del), Exon 4-5, Homozygous

      Note: ELISA-based assay for detecting alloantibodies, genomic analysis via sequencing of leukocytes for the VWF gene including exons 1-52 and about 1.5 km of VWF promoter, PCR amplification for variant confirmation, SALSA-MLPAVWF assay evaluation for partial/total gene deletions when sequencing did not reveal pathogenic explanation

    2. T116F/2960.020.040.02c.8418_8419insTCCCp.Ser2807 fs52Homozygous

      Case: T116, F, 29

      DiseaseAssertion: VWD type 3

      FamilyInfo: n/a

      CasePresentingHPOs: n/a

      CaseHPOFreeText: Bleeding Score: 6 (Kruskal–Wallis followed by Mann–Whitney U post-hoc testing Post-hoc testing ), VWF:Ag (IU/ml): 0.02, VWF:RCo (IU/ml): 0.04, FVIII:C (IU/ml): 0.02

      CaseNotHPOs: n/a

      CaseNotHPOFreeText: n/a

      CasePreviousTesting: n/a

      Gene: VWF

      Variant:

      c.8418_8419insTCCC (p.Ser2807 fs), Exon 52, Homozygous

      Note: ELISA-based assay for detecting alloantibodies, genomic analysis via sequencing of leukocytes for the VWF gene including exons 1-52 and about 1.5 km of VWF promoter, PCR amplification for variant confirmation, SALSA-MLPAVWF assay evaluation for partial/total gene deletions when sequencing did not reveal pathogenic explanation

    3. T136M/24240.0100c.2438dupGp.Gly813 fs18Heterozygous

      Case: T136, M, 24

      DiseaseAssertion: VWD type 3

      FamilyInfo: n/a

      CasePresentingHPOs: n/a

      CaseHPOFreeText: Bleeding Score: 24 (Kruskal–Wallis followed by Mann–Whitney U post-hoc testing Post-hoc testing ), VWF:Ag (IU/ml): 0.01, VWF:RCo (IU/ml): 0, FVIII:C (IU/ml): 0

      CaseNotHPOs: n/a

      CaseNotHPOFreeText: n/a

      CasePreviousTesting: n/a

      Gene: VWF

      Variant:

      c.2438dupG (p.Gly813 fs), Exon 18, Heterozygous

      Note: ELISA-based assay for detecting alloantibodies, genomic analysis via sequencing of leukocytes for the VWF gene including exons 1-52 and about 1.5 km of VWF promoter, PCR amplification for variant confirmation, SALSA-MLPAVWF assay evaluation for partial/total gene deletions when sequencing did not reveal pathogenic explanation

    4. T151M/27290.020.040.01c.3939G>A, c.5842 + 1 G>Cp.Arg1313*, -28/34Compound heterozygous

      Case: T151, M, 27

      DiseaseAssertion: VWD type 3

      FamilyInfo: n/a

      CasePresentingHPOs: n/a

      CaseHPOFreeText: Bleeding Score: 29 (Kruskal–Wallis followed by Mann–Whitney U post-hoc testing Post-hoc testing ), VWF:Ag (IU/ml): 0.02, VWF:RCo (IU/ml): 0.04, FVIII:C (IU/ml): 0.01

      CaseNotHPOs: n/a

      CaseNotHPOFreeText: n/a

      CasePreviousTesting: n/a

      Gene: VWF

      Variant:

      c.3939G>A (p.Arg1313*), Exon 28

      c.5842 + 1 G>C, Exon 34

      Compound heterozygous

      Note: ELISA-based assay for detecting alloantibodies, genomic analysis via sequencing of leukocytes for the VWF gene including exons 1-52 and about 1.5 km of VWF promoter, PCR amplification for variant confirmation, SALSA-MLPAVWF assay evaluation for partial/total gene deletions when sequencing did not reveal pathogenic explanation

    5. T103M/6560.020.040.02c.8418_8419insTCCCp.Ser2807 fs52Homozygous

      Case: T103, M, 65

      DiseaseAssertion: VWD type 3

      FamilyInfo: n/a

      CasePresentingHPOs: n/a

      CaseHPOFreeText: Bleeding Score: 6 (Kruskal–Wallis followed by Mann–Whitney U post-hoc testing Post-hoc testing ), VWF:Ag (IU/ml): 0.02, VWF:RCo (IU/ml): 0.04, FVIII:C (IU/ml): 0.02

      CaseNotHPOs: n/a

      CaseNotHPOFreeText: n/a

      CasePreviousTesting: n/a

      Gene: VWF

      Variant:

      c.8418_8419insTCCC (p.Ser2807 fs), Exon 52, Homozygous

      Note: ELISA-based assay for detecting alloantibodies, genomic analysis via sequencing of leukocytes for the VWF gene including exons 1-52 and about 1.5 km of VWF promoter, PCR amplification for variant confirmation, SALSA-MLPAVWF assay evaluation for partial/total gene deletions when sequencing did not reveal pathogenic explanation

    6. T166M/2010<0.10<0.100.06c.8418_8419insTCCCp.Ser2807 fs52Homozygous

      Case: T166, M, 20

      DiseaseAssertion: VWD type 3

      FamilyInfo: n/a

      CasePresentingHPOs: n/a

      CaseHPOFreeText: Bleeding Score: 10 (Kruskal–Wallis followed by Mann–Whitney U post-hoc testing Post-hoc testing ), VWF:Ag (IU/ml): <0.10, VWF:RCo (IU/ml): <0.10, FVIII:C (IU/ml): 0.06

      CaseNotHPOs: n/a

      CaseNotHPOFreeText: n/a

      CasePreviousTesting: n/a

      Gene: VWF

      Variant:

      c.8418_8419insTCCC (p.Ser2807 fs), Exon 52, Homozygous

      Note: ELISA-based assay for detecting alloantibodies, genomic analysis via sequencing of leukocytes for the VWF gene including exons 1-52 and about 1.5 km of VWF promoter, PCR amplification for variant confirmation, SALSA-MLPAVWF assay evaluation for partial/total gene deletions when sequencing did not reveal pathogenic explanation

    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: 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

    3. 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

    4. 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

    5. 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

    6. 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

    1. AII:1

      Proband: FA_II:1, male uknown age

      FamilyDetails: heterozygous unaffected parents, parents were first cousins, VWF:Ag on low end of reference range

      Labs: prolonged bleeding time (15min), reduced VWF:Ag (0.06 IU/mL), FVIII:Ag (0.18 IU/mL), FVIII:C (0.20 IU/mL), and VWF:RiCoF (0.06 IU/mL), absent multimers

      Genotype: p.Arg273Trp reported as c.1067C>T (MANE transcript is 817C>T)

      CAID: CA228829

    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

    1. A 23-year-old female patient

      Case: Patient from family A, a 23-year-old female consanguineous Chinese patient

      DiseaseAssertion: Type 3 von Willebrand disease

      FamilyInfo: Patient's parents were cousins, both heterozygous carriers, who had also had a son that died at 1 year old from heavy nose bleeding; no other details given

      ParentalGenotype(s): Heterozygous carriers, no details given as far as specific genotypes

      CasePresentingHPOs: HP:0000132

      Menorrhagia

      CaseHPOFreeRext:"When she was 2 years old, scalp hematoma was observed." and severely decreased FVIII:C, VWF:Ag (FVIII:C: 1.3%, VWF:Ag: 3.6%, VWF:RCo: <1.0%)

      CaseNOTHPOs: N/A

      CaseNOTHPOFreeText: "No mutation was found in the F8 or F9 gene"

      CasePreviousTesting: N/A

      GenotypingMethod: NGS was performed targeting all exons and intronic flanking regions of the F8 (OMIM: * 300841, NM_000132.3), F9 (OMIM: * 300746, NM_000133.3), and VWF (OMIM: * 613160, NM_000552.4) genes; Some exons of VWF gene could not be discriminated from its highly homologous pseudogene, and these exons were sequenced by Sanger sequencing

      Gene: VWF

      Variant: Homozygous VWF c.4696C>T (p.Arg1566Ter) nonsense mutation

      HGVS: NM_000552.5:c.4696C>T

      ClinVarID: 100382

      CAID: CA228639

      gnomAD: MAF of 0.00001333 (1/74998 alleles) in the African/African American population

    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

    2. P3

      Case: P3, M/36

      DiseaseAssertion: VWD2A

      FamilyInfo: Positive family history, no details provided.

      ParentalGenotype: NA

      CaseHPOFreeText: The bleeding score was 4, aPTT was 43 seconds, FVIII:C was 22%, VWF:RCo was not determined, and VWF:Ag was 14 IU/dL. The VWF:RCo/VWF:Ag ratio was not available. RIPA showed a loss of intermediate and high molecular weight multimers, VWF multimer analysis was 2, and platelet count was 265 × 10⁹/L.

      CasePreviousTesting: NA

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

      Gene: VWF

      Variant: c.3538+1G>A — heterozygous

      HGVS: NM_000552.5(VWF):c.3538+1G>A

      ClinVar: 100267

      CAID: CA228420

      gnomAD: absent from gnomad v4.1.0

    1. Case#: Elayaperumal_2018_V-225 , M, 1 month (onset), origin in India

      DiseaseAssertion: VWD type 3

      FamilyInfo: consanguinity not reported, family history negative

      ParentalGenotype: not reported

      CasePresentingHPOs:

      CaseHPOFreeText: bleeding score 16, VWF:Ag 0, FVIII:C 4.1%

      CaseNotHPOs:

      CaseNotHPOFreeText:

      CasePreviousTesting: not reported

      GenotypingMethod: CSGE and Sanger sequencing of VWF gene only.

      Gene: VWF

      Variant: homozygous c.1117C>T (p.Arg373*)

      HGVS: NM_000552.3:c.1117C>T

      ClinVarID: 100175

      CAID: CA228261

      gnomAD: Popmax (0.00004448 ) in the south Asian population (4/30550 alleles). 0 homozygotes reported.

      MultipleGeneVariants:

    2. Case#: Elayaperumal_2018_V-307 , F, 1 y.o. (onset), origin in India

      DiseaseAssertion: VWD type 3

      FamilyInfo: consanguinity reported. family history negative

      ParentalGenotype: not reported

      CasePresentingHPOs:

      CaseHPOFreeText: Bleeding score 4, VWF:Ag 0, FVIII:C 1.6%

      CaseNotHPOs:

      CaseNotHPOFreeText:

      CasePreviousTesting: not reported

      GenotypingMethod: CSGE and Sanger sequencing of VWF gene only.

      Gene: VWF

      Variant: homozygous c.2443-1G>C

      HGVS: NM_000552.3:c.2443-1G>C

      ClinVarID: 100222

      CAID: CA228342

      gnomAD: Popmax (-). MAF 0.000008796 (1/113692) in the European (non-Finnish) population. No homozygotes reported.

      MultipleGeneVariants:

    3. Case#: Elayaperumal_2018_V-282, F, 2 y.o. (onset), origin in India

      DiseaseAssertion: VWD type 3

      FamilyInfo: reportedly not-consanguineous. No family history of bleeding.

      ParentalGenotype: not reported

      CasePresentingHPOs:

      CaseHPOFreeText: bleeding score of 17, VWF:Ag of 0, FVIII:C 4.3%

      CaseNotHPOs:

      CaseNotHPOFreeText:

      CasePreviousTesting: not reported

      GenotypingMethod: CSGE and Sanger sequencing of VWF gene only.

      Gene: VWF

      Variant: heterozygous c.2683C>T (Gln895), c.3835G>A (p.Val1279Ile), c.3931C>T (p.Gln1311)

      HGVS: NM_000552.3:c.2683C>T, NM_000552.3:c.3835G>A, NM_000552.3:c.3931C>T

      ClinVarID: -,100288,100307

      CAID: -, CA228459, CA228496

      gnomAD: 1: not found 2: MAF of 0.002604 (27/10370 allele, Ashkenazi Jewish) https://gnomad.broadinstitute.org/variant/12-6128749-C-T?dataset=gnomad_r2_1 3:

      MultipleGeneVariants:

    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. 133115−−18Fc.3712C>T/c.3712C>Tp.Q1238X/p.Q1238X28/2816/16N/N

      Case: Patient 13, F, Hungarian

      DiseaseAssertion: VWD type 3

      FamilyInfo: compatible with recessive inheritance

      ParentalGenotype(s): n/a

      CasePresentingHPOs: n/a

      CaseHPOFreeRext: Bleeding score: 18, VWF:Ag (IU dL−1): 1, VWF:CB (IU dL−1): 1, FVIII:C (IU dL−1): 5, VWF:RCo below detection limit (<10 IU dL−1), not detectable VWF on multimer gels, bleeding episode severity increased after the menarche

      CaseNOTHPOs: n/a

      CaseNOTHPOFreeText: no inhibitor detected, did not become refractory to factor replacement therapy

      CasePreviousTesting: n/a

      Gene: VWF

      Variant:

      c.3712C>T (p.Gln1238X), Exon 28, Homozygous

      Intron 40 VNTR 16/16

      Note: multimer electrophoresis, Recombinant VWF antigen concentrations and Collagen binding activity (VWF:CB) measured by ELISA, direct sequencing of the 51 exons and the exon‐intron boundaries, Breakpoint analysis and breakpoint‐specific PCR

    2. 16*3115−−24Fc.3379+1G>A/c.3379+1G>ASplice/Splice25/2518/18PD/PD

      Case: Patient 16, F, Hungarian

      DiseaseAssertion: VWD type 3

      FamilyInfo: compatible with recessive inheritance

      ParentalGenotype(s): n/a

      CasePresentingHPOs: n/a

      CaseHPOFreeRext: Bleeding score: 24, VWF:Ag (IU dL−1): 1, VWF:CB (IU dL−1): 1, VWF:RCo below detection limit (<10 IU dL−1), FVIII:C (IU dL−1): 5, not detectable VWF on multimer gels, bleeding episode severity increased after the menarche

      CaseNOTHPOs: n/a

      CaseNOTHPOFreeText: no inhibitor detected, did not become refractory to factor replacement therapy

      CasePreviousTesting: n/a

      Gene: VWF

      Variant:

      c.3379+1G>A (Splice), Exon 25, Homozygous

      (p.Arg924Gln), Exon 21, Homozygous

      Intron 40 VNTR 18/18

      Note: multimer electrophoresis, Recombinant VWF antigen concentrations and Collagen binding activity (VWF:CB) measured by ELISA, direct sequencing of the 51 exons and the exon‐intron boundaries, Breakpoint analysis and breakpoint‐specific PCR

    3. 23342LMWM−21Mc.1730‐10C>A/c.5791C>TSplice/p.Q1931X15/3417/18N/N

      Case: Patient 23, M, Hungarian

      DiseaseAssertion: VWD type 3

      FamilyInfo: compatible with recessive inheritance

      ParentalGenotype(s): n/a

      CasePresentingHPOs: n/a

      CaseHPOFreeRext: Bleeding score: 21, VWF:Ag (IU dL−1): 4, VWF:CB (IU dL−1): 2, VWF:RCo below detection limit (<10 IU dL−1), low‐molecular‐weight multimer on multimer gels

      CaseNOTHPOs: n/a

      CaseNOTHPOFreeText: no inhibitor detected, did not become refractory to factor replacement therapy

      CasePreviousTesting: n/a

      Gene: VWF

      Variant:

      c.1730‐10C>A (Splice), Exon 15

      c.5791C>T (p.Gln1931X), Exon 34

      Intron 40 VNTR: 17/18

      Note: multimer electrophoresis, Recombinant VWF antigen concentrations and Collagen binding activity (VWF:CB) measured by ELISA, direct sequencing of the 51 exons and the exon‐intron boundaries, Breakpoint analysis and breakpoint‐specific PCR

    1. F2Proband P2K157E C1165RCompound heterozygous1.951.040.893.02.13.06

      Case: Proband 2 (P2)

      DiseaseAssertion: VWD III

      FamilyInfo:

      Father

      Lys157Glu impaired multimerization of von Willebrand factor; reduced oxidoreductase activity

      VWF are retained in the ER and fail to be transported to the Golgi

      APTT ratio (seconds): 0.94

      PT ratio (seconds): 1.02

      TT ratio (seconds): 0.98

      VWF: Ag (IU/dL): 87.2

      VWF:RCo (IU/dL): 80.3

      FVIII:C (IU/dL): 97.8

      BS: 1

      Mother

      Cys379Gly impaired multimerization of von Willebrand factor; reduced oxidoreductase activity

      VWF are retained in the ER and fail to be transported to the Golgi

      APTT ratio (seconds): 1.05

      PT ratio (seconds): 1.17

      TT ratio (seconds): 1.07

      VWF: Ag (IU/dL): 8.0

      VWF:RCo (IU/dL): 5.9

      FVIII:C (IU/dL): 13.1

      BS: 9

      ParentalGenotype: n/a

      Father: Lys157Glu, Heterozygous

      Mother: Cys379Gly, Heterozygous

      CasePresentingHPOs: n/a

      CaseHPOFreeText:

      Lys157Glu impaired multimerization; reduced oxidoreductase activity; undetectable von Willebrand factor (VWF) multimer

      VWF are retained in the ER and fail to be transported to the Golgi

      APTT ratio (seconds): 1.95

      PT ratio (seconds): 1.04

      TT ratio (seconds): 0.89

      VWF: Ag (IU/dL): 3.0

      VWF:RCo (IU/dL): 2.1

      FVIII:C (IU/dL): 3.0

      BS: 6

      CaseNotHPOs: n/a

      CaseNotHPOFreeText: n/a

      CasePreviousTesting: n/a

      Gene: VWF

      Variant:

      Lys157Glu

      Cys1165Arg

      Compound heterozygous

    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. 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. Patient 2

      Case#: A 36-year-old Italian female

      DiseaseAssertion: Restrictive cardiomyopathy (RCM), associated with a homozygous TPM1 p.Asn279His variant.

      FamilyInfo: The patient’s parents are first cousins and confirmed heterozygotes for p.Asn279His (Fig 2).The patient’s 75-year-old father was diagnosed with HCM at 42 years of age. He reportedly has a history of heart failure but is currently asymptomatic. The patient’s 67-year-old mother had her first echocardiogram after the patient’s diagnosis.(Table I).

      ParentalTesting: Father and mother

      CasePresentingHPOs: HP:0100749, HP:0002875, HP:0002094, HP:0012764, HP:0003270, HP:0000131, HP:0001635

      CaseHPOFreeText: She was diagnosed with RCM and is being evaluated for heart transplantation. was referred for chest pain, lightheadedness, shortness of breath, significant fatigue, dyspnea on exertion, three-pillow orthopnea and abdominal bloating. Eighteen months previously, she had been diagnosed with an unspecified form of cardiomyopathy after developing volume overload while hospitalized for a right oophorectomy and uterine fibroid removal. Her symptoms were consistent with NYHA III–IV heart failure. She has continued to have significant heart failure symptoms that have been difficult to control with medical therapy. Freedom from arrhythmias, however, has been notable. She is currently being considered for orthotopic heart transplantation but her evaluation has been complicated by psychiatric issues.

      CaseNotHPOs: HP:0001279, HP:0010741

      CaseNotHPOFreeText: She denied syncope and lower extremity edema

      CasePreviousTesting: The patients father and mother were tested.

      Genotyping Method: Sarcomere gene sequencing

      FunctionalAnalysis: used computational analysis and evolutionary conservation to assess the variant of TPM1 p.Asn279His.

      Variant: NM_001018005.2:c.835A>C

      ClinVar: 43446

      CAID: CA018397

      gnomAD: NR

    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. 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

    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

    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

    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

    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