3,619 Matching Annotations
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    1. VHL-3c.579–580delTGp.Val194 fsStop at codon 232this studyyesA1++––+Renal

      PatientID: VHL-3

      KindredID: 3

      Case: Sex Unknown, Age Unknown, Italian

      DiseaseAssertion: VHL

      FamilyInfo: Family history of VHL. No further details provided.

      CohortInfo: Forty-three index cases were referred to the Service of Medical Genetics, Genova, for germline mutation analysis in the VHL gene between 1995 and 2008.

      CasePresentingHPOs: HP:0010797; HP:0009711; HP:0000107; HP:0005584 (Hemangioblastoma, Retinal capillary hemangioma, Renal cyst, Renal cell carcinoma)

      CaseHPOFreeText: CNS hemangioblastoma and clinical classification: A1.

      CaseNotHPOs: HP:0002666; HP:0001732 (Pheochromocytoma, Abnormality of the pancreas)

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: p.V194Afs*61 (c.579_580del)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: N/A

      CAID: CA70052556, https://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/allele?hgvsOrDescriptor=NM_000551.3%3Ac.579_580del

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: minus_2_frameshift_variant; deletion

      CivicName: V194fs (c.579_580del)

      MultipleGeneVariants: N/A

    1. PatientID: 155

      KindredID: 58

      Case: M, 26Y0M, Chinese

      DiseaseAssertion: VHL

      FamilyInfo: The proband (patient 155) has a sister (patient 156) and a nephew (son of sister, patient 157) that were both genetically confirmed with the mutation. The sister presented with a CNS hemangioblastoma at 21 and multiple pancreatic cysts/tumors at 27, and the nephew was asymptomatic at the time of analysis.

      CasePresentingHPOs: HP:0009711; HP:0001737; HP:0001732; HP:0005584 (Retinal capillary hemangioma, Pancreatic cysts, Abnormality of the pancreas, Renal cell carcinoma)

      CaseHPOFreeText: The proband presented at age 21 with retinal angioma, and at age 26 with multiple pancreatic cysts/tumors and renal cell carcinoma.

      CaseNotHPOs: HP:0010797; HP:0002666 (Hemangioblastoma, Pheochromocytoma)

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: This patient was also published in a later paper by Wang et al., 2018 (PMID: 29330336).

      SupplementalData: Patient and family genotype-phenotype information is listed in Supplementary Table 1.

      Variant: p.E160Dfs*10 (c.480del)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: N/A

      CAID: CA432423139; https://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/by_caid?caid=CA432423139

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: minus_1_frameshift_variant

      CivicName: E160fs (c.480delG)

      MultipleGeneVariants: N/A

    1. Thirty-five unrelated patients suspected of having von Hippel-Lindau disease were analyzed and 32 VHL gene variants were found in 35 patients using PCR and SSCP by peripheral blood leukocytes. An association of clear cell renal carcinoma development with a relatively high loss of structural stability in VHL protein missense mutations was discovered. This missense variant (p.L128R) was found in a 22 year old patient with retinal and cerebellar hemangioblastomas, renal cysts, and pancreatic cysts (patient no. F41). Familial antecedents were found but unknown of any additional features than the index case.

    1. Molecular and clinical analysis of 126 French VHL families tested for renal involvement revealed 92 different mutations. 90 of these families had renal involvement. The p.K159Efs*15 (c.473dup) germline variant of the VHL gene was detected in an individual (ID 5299, Family 235). They presented with mild renal disease (simple renal cyst, multicystic kidney[s], small lesion [less than 10 mm in size] of unknown significance, or small solid tumor without indication for surgical removal [less than 30 mm in size]). Individual RCC phenotype is noted as negative. The paper states that this individual is previously reported in PMID 12202531 and/or 9829912.

    1. detected point germline vhl mutations in 14 patients

      PatientID: 10

      KindredID: 10

      Case: 32Y0M, sex unknown, ethnicity unknown

      DiseaseAssertion: VHL

      FamilyInfo: N/A

      CasePresentingHPOs: HP:0010797; HP:0009711 (hemangioblastoma; retinal capillary hemangioma)

      CaseHPOFreeText: See Table 1&2 for retinal capillary hemangioma information

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: p.F76del (c.226delTTC)

      CaseProblemVariantFreeText: N/A

      LegacyVariant: N/A

      ClinVarID: N/A

      CAID: CA357012 http://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/allele?hgvsOrDescriptor=NM_000551.3%3Ac.224_226del

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: inframe_deletion

      CivicName: F76del (c.226_228delTTC)

      MultipleGeneVariants: N/A

    1. Table 1

      PatientID: N/A

      KindredID: 18

      Case: Sex Unknown, Age Unknown, Ethnicity Unknown

      DiseaseAssertion: VHL

      FamilyInfo: Family history not mentioned. Patient’s variant reported as germline.

      CasePresentingHPOs: N/A

      CaseHPOFreeText: Patient had VHL disease (see table 1).

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: 7728151

      SupplementalData:  N/A

      Variant: p.F76del (c.227_229del)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: N/A

      CAID: CA357012, https://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/allele?hgvsOrDescriptor=NM_000551.3%3Ac.227_229delTCT

      gnomAD: N/A

      VariantEvidence: Variant reported as c.226_228del and was mapped to c.227_229del.

      MutationType: inframe_deletion

      CivicName: F76del (c.227_229del)

      MultipleGeneVariants: N/A

    1. PatientID: 7

      KindredID: 1

      Case: M, Age Unknown, German

      DiseaseAssertion: VHL

      FamilyInfo: The patient's father (patient 1) was unaffected and did not carry the mutation. The patient's mother (patient 2) presented with pheochromocytoma and carried the mutation. The patient had three siblings; one died and was affected, another (patient 5) had both mutations and presented with pheochromocytoma, and the third (patient 6) was unaffected and carried neither mutation. This patient (patient 7) had a child (patient 9) who also carried both mutations and presented with pheochromocytoma. The patient's uncle (patient 3) carried the mutation and was affected. He had a child with patient (4) who was unaffected. Their child (patient 8) carried both mutations and presented with pheochromocytoma. Patient 8 had two children; one that did not carry the mutation and was unaffected (patient 10) and another that carried both mutations but was disease free (patient 11). See Figure 3 for family pedigree.

      CasePresentingHPOs: HP:0002666 (pheochromocytoma)

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: 8772572, 7563486

      SupplementalData: N/A

      Variant: p.L188V (c.562C>G)

      LegacyVariant: p.L188V (c.775C>G)

      CaseProblemVariantFreeText: N/A

      ClinVar: 2225 https://www.ncbi.nlm.nih.gov/clinvar/variation/2225/

      CAID: CA020488 http://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/allele?hgvsOrDescriptor=NM_000551.3%3Ac.562C%3EG

      gnomAD: 0.00002121 https://gnomad.broadinstitute.org/variant/3-10191569-C-G

      VariantEvidence: N/A

      MutationType: missense_variant;transversion

      CivicName: P81S (c.241C>T) and L188V (c.562C>G)

      MultipleGeneVariants: Germline, VHL, c.241C>T (p.Pro81Ser)

    1. Of 65 VHL families from central Europe, 53 were identified with germline mutations using SSCP analysis of PCR products by peripheral blood. This missense mutation was found in a German, VHL type 1 patient with retinal angiomas (family VHL 59). The H115Y (c.343C>T) mutation was detected in the patient, referred to in the paper by c.556C>T due to a difference in transcript sequence.

    1. 1 France c.337C>T p.Arg113*

      GroupID: 12

      Case: Sex, Age, Ethnicity unknown

      DiseaseAssertion: VHL

      FamilyInfo: Unknown. 1 registrant from France was found with this variant; no family info was mentioned

      CasePresentingHPOs: HP:0030393 (Endolymphatic sac tumor)

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: p.R113* (c.337C>T)

      CaseProblemVariantFreeText: N/A

      LegacyVariant: N/A

      ClinVarID: 220414 https://www.ncbi.nlm.nih.gov/clinvar/variation/220414/

      CAID: N/A

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: stop_gained

      CivicName: R113* (c.337C>T)

      MultipleGeneVariants: N/A

    1. 38.

      Case#: 38

      DiseaseAssertion: Hemophilia B, severe

      FamilyInfo: NA

      ParentalTesting: NA

      CasePresentingHPOs: HP:0011858

      CaseHPOFreeText: FIX:C < 1%, Inhibitor present

      CaseNotHPOs: NA

      CaseNotHPOFreeText: NA

      CasePreviousTesting: All relevant sequences of F9 were PCR amplified and analyzed by DNA sequencing

      Gene: F9

      Variant: NM_000133.3:c.719G>A

      LegacyVariant:

      ClinVar: No

      CAID: CA414441403

      gnomAD:

    2. 31.

      Case#: 31

      DiseaseAssertion: Hemophilia B, severe

      FamilyInfo: NA

      ParentalTesting: NA

      CasePresentingHPOs: HP:0011858

      CaseHPOFreeText: FIX:C < 1%

      CaseNotHPOs: NA

      CaseNotHPOFreeText: NA

      CasePreviousTesting: All relevant sequences of F9 were PCR amplified and analyzed by DNA sequencing

      Gene: F9

      Variant: NM_000133.3:c.1291T>A

      LegacyVariant:

      ClinVar: No

      CAID: CA414447125

      gnomAD:

    3. 22

      Case#: 22

      DiseaseAssertion: Hemophilia B, severe

      FamilyInfo: NA

      ParentalTesting: NA

      CasePresentingHPOs: HP:0011858

      CaseHPOFreeText: FIX:C < 1%

      CaseNotHPOs: NA

      CaseNotHPOFreeText: NA

      CasePreviousTesting: All relevant sequences of F9 were PCR amplified and analyzed by DNA sequencing

      Gene: F9

      Variant: NM_000133.3:c.1145G>A

      LegacyVariant:

      ClinVar: No

      CAID: CA414446163

      gnomAD:

    4. 2.

      Case#: 2

      DiseaseAssertion: Hemophilia B, severe

      FamilyInfo: NA

      ParentalTesting: NA

      CasePresentingHPOs: HP:0011858

      CaseHPOFreeText: FIX:C < 1%

      CaseNotHPOs: NA

      CaseNotHPOFreeText: NA

      CasePreviousTesting: All relevant sequences of F9 were PCR amplified and analyzed by DNA sequencing

      Gene: F9

      Variant: NM_000133.3:c.127C>T

      LegacyVariant:

      ClinVar: No

      CAID: CA414435537

      gnomAD:

    5. 1.

      Case#: 1

      DiseaseAssertion: Hemophilia B, severe

      FamilyInfo: NA

      ParentalTesting: NA

      CasePresentingHPOs: HP:0011858

      CaseHPOFreeText: FIX:C < 1%

      CaseNotHPOs: NA

      CaseNotHPOFreeText: NA

      CasePreviousTesting: All relevant sequences of F9 were PCR amplified and analyzed by DNA sequencing

      Gene: F9

      Variant: NM_000133.3:c.88G>A

      LegacyVariant:

      ClinVar: No

      CAID: CA414434500

      gnomAD:

    6. 30.

      Case#: 30

      DiseaseAssertion: Hemophilia B, moderate

      FamilyInfo: NA

      ParentalTesting: NA

      CasePresentingHPOs: HP:0011858

      CaseHPOFreeText: FIX:C = 3%

      CaseNotHPOs: NA

      CaseNotHPOFreeText: NA

      CasePreviousTesting: All relevant sequences of F9 were PCR amplified and analyzed by DNA sequencing

      Gene: F9

      Variant: NM_000133.3:c.1291T>C

      LegacyVariant:

      ClinVar: No

      CAID: CA414447130

      gnomAD:

    7. 9.

      Case#: 9

      DiseaseAssertion: Hemophilia B, severe

      FamilyInfo: NA

      ParentalTesting: NA

      CasePresentingHPOs: HP:0011858

      CaseHPOFreeText: FIX:C < 1%

      CaseNotHPOs: NA

      CaseNotHPOFreeText: NA

      CasePreviousTesting: All relevant sequences of F9 were PCR amplified and analyzed by DNA sequencing

      Gene: F9

      Variant: NM_000133.3:c.533G>A

      LegacyVariant:

      ClinVar: No

      CAID: CA414440301

      gnomAD:

    8. 37.

      Case#: 37

      DiseaseAssertion: Hemophilia B, severe

      FamilyInfo: NA

      ParentalTesting: NA

      CasePresentingHPOs: HP:0011858

      CaseHPOFreeText: FIX:C < 1%

      CaseNotHPOs: NA

      CaseNotHPOFreeText: NA

      CasePreviousTesting: All relevant sequences of F9 were PCR amplified and analyzed by DNA sequencing

      Gene: F9

      Variant: NM_000133.3:c.655C>T

      LegacyVariant:

      ClinVar: No

      CAID: CA255347

      gnomAD:

    9. 8.

      Case#: 8

      DiseaseAssertion: Hemophilia B, severe

      FamilyInfo: NA

      ParentalTesting: NA

      CasePresentingHPOs: HP:0011858

      CaseHPOFreeText: FIX:C < 1%

      CaseNotHPOs: NA

      CaseNotHPOFreeText: NA

      CasePreviousTesting: All relevant sequences of F9 were PCR amplified and analyzed by DNA sequencing

      Gene: F9

      Variant: NM_000133.3:c.422G>A

      LegacyVariant:

      ClinVar: No

      CAID: CA414438897

      gnomAD:

    1. mutation

      Case#: HB189 (assumed male, Hawaiian)

      DiseaseAssertion: No disease assertion made

      FamilyInfo: Of the 30 families, germline or so- matic origins were found in 9 mothers, 5 maternal grandmothers, and 16 maternal grandfathers. For the 29 incomplete families, origins were found in 14 mothers, 5 maternal grandmothers, and 10 maternal grandfathers. Comparing the two family types shows no significant difference (P=0.29), suggesting that no major bias occurs in the analyses because of the inclusion of incomplete families

      ParentalTesting: N/A

      CasePresentingHPOs: N/A

      CaseNotHPOs: N/A

      CasePreviousTesting: N/A

      Gene: F9

      Variant: NM_000133.4:c.127C>T (p.Arg43Trp)

      ClinVar: 811505

      CAID: CA414435537

      gnomAD: Absent/Not Reported

    1. Thr37

      Case#: Pezeshkpoor_Patient_L (male,. 70 y/o, from Switzerland)

      DiseaseAssertion: Hemophilia B

      FamilyInfo: Mutation was identified in two brothers and six female relatives

      ParentalTesting: N/A

      CasePresentingHPOs: HP:0011858

      CaseHPOsFreeText: bleeding episodes during VKA therapy, low FIX:C levels

      CasePreviousTesting: N/A

      Gene: F9

      Variant: NM_000133.4:c.109G>A (p.Ala37Thr)

      ClinVar: 804089

      CAID: CA10529736

      gnomAD: allele Frequency in population where variant was found in the highest (South Asian population): 0.0001128

    2. Thr37 mutation

      Case#: Pezeshkpoor_Patient_P (male, 68 y/o, from Switzerland)

      DiseaseAssertion: Moderate Hemophilia B

      FamilyInfo: N/A

      ParentalTesting: N/A

      CasePresentingHPOs: HP:0011858

      CaseHPOsFreeText: diffuse subcutaneous bleeding, low FIX:C levels (3%), international normalized ratio (INR) of 3.3, a prolonged aPTT of 88 s, reduced vitamin K-dependent coagulation factors

      CasePreviousTesting: N/A

      Gene: F9

      Variant: NM_000133.4:c.109G>A (p.Ala37Thr)

      ClinVar: 804089

      CAID: CA10529736

      gnomAD: Allele Frequency in population where variant was found in the highest (South Asian population): 0.0001128

    3. Val37 mutation.

      Case#: Patient R (male, 83 y/o)

      DiseaseAssertion: Severe Hemophilia B

      FamilyInfo: N/A

      ParentalTesting: N/A

      CasePresentingHPOs: HP:0011858, HP:0012233

      CaseHPOsFreeText: reduced factor IX activity (FIX:C: 2.4%), extensive subcutaneous bleeding

      CaseNotHPOs: None

      CasePreviousTesting: N/A

      Gene: F9

      Variant: NM_000133.4:c.110C>T (p.Ala37Val)

      ClinVar: Absent

      CAID: CA414435437

      gnomAD: Allele Frequency (European-non Finnish): 0.00002186

    1. ile 40-phe

      Case: E91M

      DiseaseAssertion: Hemophilia B

      FamilyInfo: Family E91M

      ParentalTesting: Not available

      CasePresentingHPOs: N/A

      CaseHPOFreeText: Factor IX Coagulant: 30

      CaseNotHPOs: N/A

      CasePreviousTesting: N/A

      Gene: F9

      Variant: NM_000133.4:c.19A>T

      LegacyVariant: c.48A>T (p.Ile7Phe)

      ClinVar: 367997

      CAID: CA10529708

      gnomAD: Filtering AF: 0.001461 (no homozygotes)

    1. 19

      Case#: 19

      DiseaseAssertion: Hemophilia B, moderate

      FamilyInfo: NA

      ParentalTesting: NA

      CasePresentingHPOs: NA

      CaseHPOFreeText: FIX:C = 1.9%

      CaseNotHPOs: NA

      CaseNotHPOFreeText: NA

      CasePreviousTesting: All exons, UTRs, exon-intron junction regions, and the promotor of F9 were amplified by PCR and analyzed by direct DNA sequencing

      Gene: F9

      Variant: NM_000133.3:c.755G>A

      LegacyVariant:

      ClinVar: No

      CAID: CA414443205

      gnomAD:

    2. 7

      Case#: 7

      DiseaseAssertion: Hemophilia B, severe

      FamilyInfo: NA

      ParentalTesting: NA

      CasePresentingHPOs: NA

      CaseHPOFreeText: FIX:C < 1%

      CaseNotHPOs: NA

      CaseNotHPOFreeText: NA

      CasePreviousTesting: All exons, UTRs, exon-intron junction regions, and the promotor of F9 were amplified by PCR and analyzed by direct DNA sequencing

      Gene: F9

      Variant: NM_000133.3:c.677G>A

      LegacyVariant:

      ClinVar: No

      CAID: CA121128

      gnomAD:

    3. 18

      Case#: 18

      DiseaseAssertion: Hemophilia B, moderate

      FamilyInfo: NA

      ParentalTesting: NA

      CasePresentingHPOs: NA

      CaseHPOFreeText: FIX:C = 3.9%

      CaseNotHPOs: NA

      CaseNotHPOFreeText: NA

      CasePreviousTesting: All exons, UTRs, exon-intron junction regions, and the promotor of F9 were amplified by PCR and analyzed by direct DNA sequencing

      Gene: F9

      Variant: NM_000133.3:c.284A>G

      LegacyVariant:

      ClinVar: No

      CAID: CA414437372

      gnomAD:

    1. ion of a causative mutation

      Case#: HBF12 (North Indian origin)

      DiseaseAssertion: Severe Hemophilia B

      FamilyInfo: For each patient at least two first or second degree relatives were also analyzed. In every case the mother of the patient was analyzed to establish the presence of the mutation in the heterozygous state.

      ParentalTesting: Mother

      CasePresentingHPOs: HP:0011858

      CaseHPOsFreeText: reduced factor IX activity

      CaseNotHPOs: N/A

      CasePreviousTesting: N/A

      Gene: F9

      Variant:NM_000133.4:c.127C>T (p.Arg43Trp)

      ClinVar: 811505

      CAID: CA414435537

      gnomAD: Absent/Not Reported

    2. identify the causative mutation

      Case#: Belvini_Proband_7 (Italian)

      DiseaseAssertion: Severe Hemophilia B

      FamilyInfo: N/A

      ParentalTesting: N/A

      CasePresentingHPOs: HP:0011858

      CaseHPOsFreeText: reduced factor IX activity

      CaseNotHPOs: N/A

      CasePreviousTesting: N/A

      Gene: F9

      Variant:NM_000133.4:c.83G>A (p.Cys28Tyr)

      LegacyVariant: c.112G>A (p.Cys-19Tyr )

      ClinVar: Absent

      CAID: CA414434483

      gnomAD: Absent/Not Reported

    3. identify the causative mutation

      Case#: Belvini_Proband_6 (Italian)

      DiseaseAssertion: Mild Hemophilia B

      FamilyInfo: N/A

      ParentalTesting: N/A

      CasePresentingHPOs: HP:0011858

      CaseHPOsFreeText: reduced factor IX activity

      CaseNotHPOs: N/A

      CasePreviousTesting: N/A

      Gene: F9

      Variant: NM_000133.4:c.82T>C (p.Cys28Arg)

      LegacyVariant: c.11T>C (p.Cys-19Arg )

      ClinVar: 10657

      CAID: CA255450

      gnomAD: Absent/Not Reported

    1. The final list of mutations is provided in Supplementary Table S1.

      Case#: N/A

      DiseaseAssertion: Severe Hemophilia B

      FamilyInfo: N/A

      ParentalTesting: N/A

      CasePresentingHPOs: N/A

      CaseHPOsFreeText: N/A

      CaseNotHPOs: N/A

      CasePreviousTesting: N/A

      Gene: F9

      Variant: NM_000133.4:c.112A>C (p.Asn38His)

      ClinVar: Absent

      CAID: CA414435439

      gnomAD: Absent/NotReported

    2. The final list of mutations is provided in Supplementary Table S1.

      Case#: N/A

      DiseaseAssertion: Mild Hemophilia B

      FamilyInfo: N/A

      ParentalTesting: N/A

      CasePresentingHPOs: N/A

      CaseHPOsFreeText: N/A

      CaseNotHPOs: N/A

      CasePreviousTesting: N/A

      Gene: F9

      Variant: NM_000133.4:c.62G>T ((p.Gly21Val)

      ClinVar: Absent

      CAID: CA414434385

      gnomAD: Absent/NotReported

    1. 6365

      Case#: Patient A (assumed male)

      DiseaseAssertion: Moderate, Familial Hemophilia B

      FamilyInfo: Mother and two sisters were heterozygous for the CG to CA transition; One sister’s prenatal sample was hemizygous for absence of cleavage indicating an affected male, confirmed after birth.

      ParentalTesting: Mother was heterozygous for the variant

      CasePresentingHPOs: HP:0011858

      CaseHPOsFreeText: reduced factor IX activity (FIX:C: 2 FIX:Ag: 40)

      CaseNotHPOs: N/A

      CasePreviousTesting: N/A

      Gene: F9

      Variant: NM_000133.4:c.128G>A (p.Arg43Gln)

      LegacyVariant: c.6365 G>A (p.Arg-4Gln)

      ClinVar: 810864

      CAID: CA414435539

      gnomAD: Absent/Not Reported

    1. Case#: Patient UK22 (male)

      DiseaseAssertion: Severe Hemophilia B

      FamilyInfo: Mother is a carrier, two sisters (II:3, II:5) of patient UK22 were found to be carriers, niece of patient UK22 (III:4) is not a carrier

      ParentalTesting: Mother is a carrier, Father was unaffected (according to pedigree; figure 1)

      CasePresentingHPOs: HP:0011858

      CaseHPOsFreeText: reduced factor IX activity (<1% of factor IX; factor IX activity of 2 IU/dl), haemarthrosis of the knee, referred at 2 y/o,

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: Analysis of the essential regions of the gene; the promoter, exons, and regions containing the normal RNA processing signals only found this variant, and no other.

      Gene: F9

      Variant: NM_000133.4:c.50T>A (p.Ile17Asn)

      LegacyVariant: c.79T>A (p.Ile-30Asn)

      ClinVar: Absent

      CAID: CA414434315

      gnomAD: Absent/Not Reported

    1. For p.Val682Leu,

      Case#: P5 (female)

      DiseaseAssertion: Carrier

      FamilyInfo: N/A

      ParentalTesting: Investigation found that large gene defect was not found in the patient P5's mother and grandmother

      CasePresentingHPOs: HP:0003125, HP:0001928, HP:0001892

      CaseHPOFreeText: Low FVIII levels (FVIII:C levels were significantly decreased compared to the WT (13.4% ± 0.8, P < 0.01); FVIII:Ag levels were normal both in the conditioned media and cell lysate (respectively 90.7% ± 6.3 and 109.0% ± 9.5)), abnormal blood coagulation, mild bleeding tendency, haematoma

      CaseNotHPOs: N/A

      CaseNotHPOsFreeText: N/A

      CasePreviousTesting: Molecular Analysis included a southern blot assay, PCR, dHPLC and a multiplex ligation-dependent probe amplification analysis. Plasmid mutagenesis, plasmid transfection and in silico analysis were also performed.

      Gene: F8

      Variant: NM_000132.4:c.2044G>C

      CAID: CA414909252

      gnomAD: Absent/Not Reported

    1. (Leu24Pro)

      Case#: HB-KHF-04 (Male, Korean)

      DiseaseAssertion: Severe Hemophilia B

      FamilyInfo: Among the 33 patients, 13 had a family history (39%), while the rest of the patients did not (sporadic, 61%). 27 patients (82%) had the severe form of the disease, while 6 patients (18%) had the moderate form

      ParentalTesting: N/A

      CasePresentingHPOs: HP:0003645, HP:0011858

      CaseHPOsFreeText: Prolonged partial thromboplastin time, reduced factor IX activity

      CaseNotHPOs: None

      CasePreviousTesting: aPTT and one-stage clotting assay at labs where patients were ascertained: FIX-deficient plasma (STA®-Deficient IX; Diagnostica Stago, Asnieres-sur-Seine, France; reference range, 60–150%) at Samsung Medical Center or HemosIL™ (Instrumentation Laboratory, Milan, Italy; reference range, 50–145%) at the Korea Hemophilia Foundation.

      Gene: F9

      Variant: NM_000133.4:c.71T>C (p.Leu24Pro)

      ClinVar: Absent

      CAID: CA414434410

      gnomAD: Absent/Not Reported

    1. mutation

      Case#: Cases 1157, 1125, 1382, and 1434

      DiseaseAssertion: Severe Hemophilia B

      FamilyInfo: In 16 cases, the family pedigree showed more than one affected individual (familial cases) and 12 cases were sporadic. In 17 cases, familial data was not available.

      ParentalTesting: N/A

      CasePresentingHPOs: HP:0011858

      CaseHPOsFreeText: reduced factor IX activity (Case 1157 FIX:C: <1; FIX:Ag: 38) (Case 1125 FIX:C: <1; FIX:Ag: n/a (Case 1382 FIX:C: <1; FIX:Ag: 1) Case 1434 FIX:C <1; FIX:Ag: n/a)

      CaseNotHPOs: N/A

      CasePreviousTesting: N/A

      Gene: F9

      Variant: NM_000133.4:c.127C>T (p.Arg43Trp)

      LegacyVariant: c.6364C>T (p.Arg-4Trp)

      ClinVar: 811505

      CAID: CA414435537

      gnomAD: Absent/Not Reported

    1. mutations

      Case#: Chan_Hong Kong 2 & Chan_Hong Kong 3 (Southern Chinese, assumed male)

      DiseaseAssertion: Severe Hemophilia B

      FamilyInfo: Carrier testing of at risk females in each family was completed by direct restriction enzyme analysis after determination of the specific FIX defect for the index patient

      ParentalTesting: N/A

      CasePresentingHPOs: HP:0011858

      CaseHPOsFreeText: reduced factor IX activity (Chan_Hong Kong 2 FIX:Ag: 0.93; FIX:C: 0.04) (Chan_Hong Kong 3 FIXAg: 0.82; FIX:C: 0.01)

      CaseNotHPOs: N/A

      CasePreviousTesting: N/A

      Gene: F9

      Variant: NM_000133.4:c.128G>A (p.Arg43Gln)

      LegacyVariant: c.6365 G>A (p.Arg-4Gln)

      ClinVar: 810864

      CAID: CA414435539

      gnomAD: Absent/Not Reported

    1. mutations

      Case#: VAN DE Water_NZ 2 (New Zealand, assumed male)

      DiseaseAssertion: Moderate Hemophilia B

      FamilyInfo: In 22 of the 32 families the mutation resulted in alteration of a restriction enzyme site. In these cases, researchers developed a rapid PCR based diagnosis assay, which eliminated the need for extensive family studies (enabled successful prenatal and carrier diagnostic studies to be undertaken in 22 subjects from five families)

      ParentalTesting: N/A

      CasePresentingHPOs: HP:0011858

      CaseHPOsFreeText: reduced factor IX activity (2%)

      CaseNotHPOs: N/A

      CasePreviousTesting: N/A

      Gene: F9

      Variant: NM_000133.4:c.128G>A (p.Arg43Gln)

      LegacyVariant: c.6365 G>A (p.Arg-4Gln)

      ClinVar: 810864

      CAID: CA414435539

      gnomAD: Absent/Not Reported

    1. mutations

      Case#: UK 130, Malmo 19, UK 134, Malmo 6, UK 129, Malmo 40, Malmo 20 (assumed male, from UK and Malmö, Sweden)

      DiseaseAssertion: UK 130: Moderate Hemophilia B Malmo 19: Moderate Hemophilia B UK 134: Severe Hemophilia B Malmo 6: Severe Hemophilia B UK 129: Moderate Hemophilia B Malmo 40: Moderate Hemophilia B Malmo 20: Moderate Hemophilia B

      FamilyInfo: None

      ParentalTesting: N/A

      CasePresentingHPOs: reduced factor IX activity

      CaseHPOsFreeText: UK 130 FIX:C: 1.6 Malmo 19 FIX:C: 2.3 ; FIX:AG: 36 UK 134 FIX:C: <1 Malmo 6 FIX:C: <1 ; FIX:AG: 26-35 UK 129 FIX:C: 4 Malmo 40 FIX:C: 1 ; FIX:AG: 30 Malmo 20 FIX:C: 2 ; FIX:AG: 27

      CaseNotHPOs: N/A

      CasePreviousTesting: N/A

      Gene: F9

      Variant: NM_000133.4:c.127C>T (p.Arg43Trp)

      ClinVar: 811505

      CAID: CA414435537

      gnomAD: Absent/Not Reported

    1. P1-IT

      Case#: P1-IT, F, Age of Report: 55 y.o. Age of Onset: 14 y.o., Ethnicity: Italy.

      CasePresentingHPOs: HP:0000662 (Nyctalopia), HP:0007663 (Reduced visual acuity/hand motion visual acuity), HP:0000510 (Rod-cone dystrophy/Retinitis pigmentosa), HP:0007737 (Bone spicule pigmentation of the retina/bone-spicule pigmentation), HP:0007401 (Macular atrophy), HP:0500081 (Pseudophakia), HP:0012832 (Bilateral), HP:0000365 (Hearing impairment/post-verbal hearing loss), HP:0008619 (Bilateral sensorineural hearing impairment/moderate, bilateral and symmetric sensorineural hearing loss)

      CaseHPOFreeText: The patient P1-IT is a 55 year-old female sporadic case referred for genetic testing with a clinical diagnosis of Usher syndrome (Table 1). She is the second of two sisters born to reportedly non-consanguineous parents from a small local community. Her medical history is insignificant with no cases of hearing loss and/or RP in the family (Fig. 1a).

      The patient presented night blindness since the age of 14 years, and received a diagnosis of RP at the age of 19 years. At the last ophthalmological examination (55 years), she had a hand motion visual acuity in both eyes, an RP fundus with bone-spicule pigmentation (BSP) in mid-periphery, and macular atrophy (Fig. 2a). FAF imaging revealed reduced autofluorescence at the posterior pole, with focal areas of absent autofluorescence surrounding the optic disc and in the macular area (Fig. 2a). SD-OCT imaging revealed a diffuse retinal pigment epithelium (RPE) dystrophy with epiretinal membranes but without cystoid macular edemas (CME) (Fig. 2a). Scotopic and photopic ERG responses were unrecordable in both eyes (Table 2), and she had bilateral pseudophakia. She also suffers from post-verbal hearing loss with a reported onset at the age of 18 years and she is currently using hearing aids (auditory prostheses). The most recent audiological examination confirmed the diagnosis of moderate, bilateral and symmetric sensorineural hearing loss (SNHL) with a Pure Tone Average (PTA) of 59 dB in both sides and a sloping audiogram at intermediate-high frequencies (500 Hz–8000 Hz) (Fig. 3). The hearing loss appeared non-progressive over the years.

      CaseNotHPOs: N/A.

      CaseNotHPOFreeText: N/A.

      CasePreviousTesting: N/A.

      CaseMethod1: N/A.

      CaseMethod2: N/A.

      CaseGenotypingMethod: Clinical exome.

      Variant: NM_021831.6:c.323C>G (p.Pro108Arg).

      ClinVar: 1184585.

      CAID: CA346170082.

      gnomAD: Frequency: 2.800e-7. Link: https://gnomad.broadinstitute.org/variant/chr2-27053509-C-G?dataset=gnomad_r4.

      VariantEvidence: N/A.

      CaseAddInfo: N/A.

      CasePMIDs: N/A.

    2. P8-CH

      Case#: P8-CH, F, Age or Report: 36 y.o. Age of Onset: Teens, Ethnicity: Switzerland.

      CasePresentingHPOs: HP:0007663 (Reduced visual acuity), HP:0000662 (Nyctalopia), HP:0030329 (Retinal thinning/reduced retinal thickness), HP:0005101 (High-frequency hearing impairment)

      CaseHPOFreeText: This proband started experiencing a decrease in visual acuity since her teens, followed by night blindness, and was referred for an ophthalmological assessment at the age of 16 years. She was from a non-consanguineous family, however both parents came from the same village (Fig. 1f).

      At the first visit, her BCVA was 0.3 D in both eyes and the scotopic ERG responses were severely reduced, while the 30-Hz Flicker had reduced amplitude. At her last visit, aged 38 years, her BCVA was 0.1 D in both eyes, and the GVF was reduced to 30° bilaterally. FAF imaging showed several areas of patchy hypoautofluroescence at the posterior pole, which increased over time. The OCT scans at the last visit showed reduced retinal thickness with a severely altered layer of RPE and an absent ellipsoid layer at the posterior pole (Fig. 2f, Table 2). She never complained of hearing problems, however, the audiogram perfomed when she was 36 years old showed a reduced hearing threshold at higher frequencies (between 2000 and 4000 Hz) to 35 dB in the right ear and to 20 dB in the left side (Fig. 3, Table 2).

      CaseNotHPOs: N/A.

      CaseNotHPOFreeText: N/A.

      CasePreviousTesting: N/A.

      CaseMethod1: N/A.

      CaseMethod2: N/A.

      CaseGenotypingMethod: WES.

      Variant: NM_021831.6:c.908G>A (p.Arg303His).

      ClinVar: 1044022.

      CAID: CA1567753.

      gnomAD: Frequency: 0.00001995. Link: https://gnomad.broadinstitute.org/variant/chr2-27055253-G-A?dataset=gnomad_r4.

      VariantEvidence: N/A.

      CaseAddInfo: No other family member had vision problems, however her younger sister (II.3) had severe hearing impairment (Fig. 1f). The genetic testing of the proband revealed a homozygous missense variant c.908G>A, p.(Arg303His) in the AGBL5 gene (Table 1, Fig. 1f). The sister who presented isolated severe hearing loss was heterozygous for the AGBL5 variant but was found to be compound heterozygous for two variants (c.35del and c.2229T>C) in the GJB2 gene, explaining her hearing impairment (Fig. 1f). The proband did not carry any of the GJB2 variants.

      CasePMIDs: N/A.

    1. Main Outcome Measures

      Case: Patient 2

      CasePresentingHPOsFreeText: A diagnosis of CSNB1 or CSNB2 was based on standard ERGs. The photopic ERG was the most specific criterion to distinguish between CSNB1 and CSNB2 because it showed a “square-wave” appearance in CSNB1 and a decreased b-wave in CSNB2. Patients with CSNB2 had rod- and cone-related problems. reduced visual acuity, nystagmus, symptoms of night blindness, or high refractive error at a young age.

      CasePreviousTesting:

      CaseGenotypingMethod: Molecular analysis was performed by direct Sanger sequencing of the entire coding regions in CACNA1F and CABP4 in patients with CSNB2. The coding exons and flanking intron sequences of the different CSNB2 genes were amplified by standardized polymerase chain reaction.

      Variant: c.952_954del (p.Phe318del)

      ClinVarID: or CAID: CA645509415

      gnomAD: variant not present in gnomAD v2.1.1

      AddCaseInfo:

      PreviouslyPublished:

      VariantEvidence:

    2. Clinical Examination

      Case: Patient 4

      CasePresentingHPOsFreeText: A diagnosis of CSNB1 or CSNB2 was based on standard ERGs. The photopic ERG was the most specific criterion to distinguish between CSNB1 and CSNB2 because it showed a “square-wave” appearance in CSNB1 and a decreased b-wave in CSNB2. Patients with CSNB2 had rod- and cone-related problems. reduced visual acuity, nystagmus, symptoms of night blindness, or high refractive error at a young age.

      CasePreviousTesting:

      CaseGenotypingMethod: Molecular analysis was performed by direct Sanger sequencing of the entire coding regions in CACNA1F and CABP4 in patients with CSNB2. The coding exons and flanking intron sequences of the different CSNB2 genes were amplified by standardized polymerase chain reaction.

      Variant: c.1496+1G>A

      ClinVarID: or CAID: CA412916990

      gnomAD: variant not present in gnomAD v2.1.1

      AddCaseInfo:

      PreviouslyPublished:

      VariantEvidence:

    1. CIC01611

      Case: Shamieh_FamilyB_II:1; CIC01611

      CasePresentingHPOsFreeText: Rod-cone dystrophy, Each subject underwent an ophthalmic exami- nation with clinical assessment as previously described. The three affected individuals with KIZ variants in this study were all diagnosed with RCD in their late teens on the basis of night blindness followed by changes in mid- peripheral visual fields and undetectable responses in a full-field electroretinogram by approximately 35 years of age.

      CasePreviousTesting: No mention of previous testing

      CaseGenotypingMethod: screening of coding and flanking exonic regions of KIZ by direct Sanger sequencing

      Variant: c.226C>T (p.Arg76*); homozygous

      ClinVarID: or CAID: CA151548

      gnomAD: Variant present at a frequency of 0.006316 in the Ashkenazi Jewish (9658 alleles tested) and 0.001173 in the Latino populations.

      AddCaseInfo: To investigate whether the stop variant represents a founder alteration, we performed haplotype analysis for each of the index subjects (CIC00173 II.2 from family A) and CIC01611 II.1 from family B) by selecting 11 microsat- ellite DNA markers flanking the KIZ locus. 25 These markers were distributed over a physical distance of z7.38 Mb, cor- responding to z10.5 cM (genetic distance according to Marshfield genetic maps). Both subjects were found to share a common haplotype of five polymorphic microsa- tellites (DS20S54, DS20S63, DS20S190, DS20S868, and DS20S180) flanking KIZ and spanning z1.75 cM (1.18 Mb) (Figure 1). This result suggests that c.226C>T (p.Arg76*) is most likely a founder mutation causing autosomal-recessive RCD in the southern European population

      PreviouslyPublished:

      VariantEvidence:

    1. Background

      Case: EC17

      CasePresentingHPOsFreeText: All probands underwent a complete ophthalmological evaluation, including best corrected visual acuity, biomicroscopy, color fundus photography, fundus autofluorescence, electrophysiological testing, and swept‐source optical coherence tomography (DRI SS OCT Triton, (TOPCON corporation)). The clinical diagnosis of a RD was made by retina specialists based on the patient's history of visual symptoms, clinical examination, retinal imaging, and electrophysiology. Clinical and family history details were collected during genetic consultation.

      CasePreviousTesting:

      CaseGenotypingMethod: Gene enrichment during library preparation was performed using the commercial ClearSeq Inherited Disease Panel (Agilent Technologies). This panel has a 10.5 Mb capture capacity and targets the coding exons and splicing regions of 2,742 genes involved in inherited disorders. The panel includes 199 RD‐related genes, in accordance with the Retinal Information Network (RETNET; https://sph.uth.edu/retnet/home.htm) and the Online Mendelian Inheritance in Man (OMIM) catalog (https://www.omim.org/ ) at the time of the study (accessed on September 2018). One hundred and four of these genes have been implicated exclusively in non‐syndromic RDs, 23 are associated with both syndromic and non‐syndromic forms of RDs, and 72 are involved only in syndromic RDs (Table S1).

      Variant: c.2554_2557delGAGA, p.Glu852GlnfsTer13

      ClinVarID: or CAID: CA270089

      gnomAD: found in one european (non-finnish) genome

      AddCaseInfo:

      PreviouslyPublished:

      VariantEvidence:

    1. LL89

      Case#: LL89, F, Age of Diagnosis: 36 y.o., Ethnicity: Portuguese origin.

      CasePresentingHPOs:HP:0000613 (Photophobia), HP:0000662 (Nyctalopia/Night blindness), HP:0030786 (Photopsia), HP:0001133 (Constriction of peripheral visual field), HP:0007663 (Reduced visual acuity), HP:0000551 (Color vision defect/loss of color vision), HP:0012508 (Metamorphopsia), HP:0000543 (Optic disc pallor/pale optic discs), HP:0000533 (Chorioretinal atrophy/generalized chorioretinal atrophy), HP:0002076 (Migraine)

      CaseHPOFreeText: Proband was born a from consanguineous union between first degree cousins of Portuguese origin. She was diagnosed with a classical form of retinitis pigmentosa at the age of 36 years.

      Initial visual complaints started with photophobia at 11 years of age and progressed to night blindness and photopsia by the age of 25. Constriction of the peripheral visual field was noted at the age of 28. Disease progression led to a sharp reduction in visual acuity at age 38 and to loss of color vision by the age of 40. The patient underwent cataract surgery at age 40 and 48. At 50 she developed metamorphopsia in the OS.

      At the last ophthalmologic examination, patient P2 showed a BCVA of 0.3 in the OD, 0.16 in the OS, and severe constriction of the peripheral visual field, with bilateral tunnel-like vision, restricted to the 5 degrees central. Dilated fundus examination revealed attenuated retinal vessels, pale optic discs (Fig 2B) and a marked generalized chorioretinal atrophy in the posterior pole and in the periphery, with areas of complete atrophy in the inferior peripheral region of the right eye. Mild to moderate mottled pigment deposition in the retinal periphery, along with some irregular white patches in the posterior pole near the superior vessels, was also observed. Fundus autofluorescence was notable for generalized hypo-autofluorescence with a wide hyper-autofluorescent ring in the posterior pole (Fig 2D). SD-OCT revealed pronounced atrophy of the outer retinal layers and the presence of a foveal cyst (Fig 2F).

      P2 gave birth to two children.

      P2 displays a pale optic disc, vascular thinning and marked retinal changes, with opalescent areas of the retinal tissue in the periphery and central atrophic lesion. Scarse pigment deposition can also be found adjacent to the optic nerve head and periphery.

      P2 suffered from frequent migraines and recently underwent a cerebral CT imaging examination, which revealed normal ventricular volumes and absence of other morphological anomalies.

      CaseNotHPOs: N/A.

      CaseNotHPOFreeText: N/A.

      CasePreviousTesting: N/A.

      CaseMethod1: N/A.

      CaseMethod2: N/A.

      CaseGenotypingMethod: WES and Sanger.

      Variant: NM_012106.4:c.33_36del.

      ClinVar: 2577503.

      CAID: CA2580617535.

      gnomAD: N/A.

      VariantEvidence: N/A.

      CaseAddInfo: Patient P2’s paternal aunt (P3) and her uncle (P4) were also diagnosed with RP, showing similar progression and manifestations. Specifically, P3 began to be visually impaired in her 20s with the onset of night blindness. Her visual field progressively shrank for both eyes and considerably worsened after the birth of her two daughters in her 30s, evolving to a state of complete blindness by the age of 50.

      There is no clinical history of other ciliopathic disorders in this family, with the exception of P4, who suffered from chronic bronchitis. This latter patient died of multiple myeloma prior to this study, thus preventing further clinical analysis. Interestingly, P4 never conceived any offspring in spite of multiple attempts (as reported by his sister, patient P3), whereas both female patients P2 and P3 had two healthy children.

      CasePMIDs: N/A.

    1. while

      Case: AD64, 43 year old female

      CasePresentingHPOsFreeText: All probands and their affected and unaffected relatives were enrolled at the Retinal Dystrophy Unit of ASST Santi Paolo e Carlo Hospital, University of Milan (Italy), from 2011 to early 2019. They underwent detailed clinical examination, including best-corrected visual acuity, slit-lamp examination, visual field analysis, spectral-domain optical coherence tomography (SD-OCT), fundus autofluorescence (FAF), and dark- and light-adapted electroretinogram (ERG). Diagnosis of RP was based on typical clinical signs (optic disc pallor, bone spicule pigmentation, retinal vessel attenuation), characteristic full-field electoretinographic patterns, varying from reduced A- and B-wave amplitudes in early stages to nondetectable ERG in advanced stages (as established by the International Society for Clinical Electrophysiology of Vision), visual field constriction, and particular SD-OCT and FAF patterns. Patients suspected to have US (retinitis pigmentosa and sensorineural bilateral hearing loss) also underwent complete audiometric evaluation.

      Detailed demographic data and family history were recorded by interview. For each proband, the disease (RP or US) and the inheritance model (AD-RP, AR-RP, or XL-RP) were suspected on the basis of clinical data and pedigree, when available.

      CasePreviousTesting:

      CaseGenotypingMethod: DNA was extracted using a commercial kit (E.Z.N.A. Blood DNA kit; Omega Bio-Tek, Norcross, GA, USA) and analyzed by next-generation sequencing (NGS) on an Illumina MiSeq personal sequencer (Illumina, San Diego, CA, USA) using an in-house bioinformatics pipeline as previously described.9,10

      The gene panels were periodically updated with new disease-associated genes reported in the literature, so that four different custom NGS panel releases were used in the 8-year period of observation. The list of genes in the latest multigene panel (used to test 267 samples between 2017 and 2019) is shown in Supplementary Table S1; a comparison of genes included in the other three panels can be found in Supplementary Table S2. All genetic variants were validated by Sanger sequencing using a Beckman Coulter CEQ 8000 sequencer (Beckman Coulter, Milan, Italy). Sanger sequencing was also used for family segregation studies when additional family members were available

      Variant: c.2539C>T, p.(Arg847*)

      ClinVarID: or CAID: CA353607

      gnomAD: absent

      AddCaseInfo:

      PreviouslyPublished:

      VariantEvidence:

    1. respectively

      Case: UTAD102_Proband

      CasePresentingHPOsFreeText: The prospectus was a 52-year-old Hispanic male with only hand motion vision in both eyes. He had two brothers and three children diagnosed with RP (Figure 1A). Extensive bone-spicule-like pigment deposits and severely attenuated blood vessels were seen bilaterally, consistent with end stage RP. Optic disc pallor and macular retinal pigment epithelium atrophy were also present. Goldman visual fields were not possible due to the patient’s poor vision.

      CasePreviousTesting: Each proband has been previously tested for mutations in the complete coding region of CA4, CRX, FSCN2, IMPDH1, NRL, PRPF31, RDS, RHO, ROM1, and RP9. Samples were also screened for mutations in mutational “hot spots” of RP1, PRPF3, PRPF8, and NR2E3.

      CaseGenotypingMethod: PCR products were treated with ExoSapIt (USB, Cleveland, OH) and sequenced unidirectionally with BigDye v1.1 (Applied Biosystems) and the primers described in Table 1. PCR product sequencing was employed to screen patient DNA for mutations in the entire coding region and flanking intron/exon junction of TOPORS.

      Variant: A 1 bp deletion at nucleotide 2,569 was detected (c.2569delA; p.Arg857GlyfsX9). This deletion caused a frame-shift at amino acid residue 857, and was predicted to result in the addition of eight incorrect amino acids followed by premature termination.

      ClinVarID: or CAID: CA645509427

      gnomAD: absent

      VariantEvidence:

    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: L396P

      Variant1ClinVarID:

      Variant1CAID: CA355963499

      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: P496R

      Variant1ClinVarID: 496861

      Variant1CAID: CA2802275

      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: A436P

      Variant1ClinVarID:

      Variant1CAID: CA355963897

      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: G208D

      Variant1ClinVarID: 554590

      Variant1CAID: CA355961948

      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: E276K

      Variant1ClinVarID:

      Variant1CAID: CA355962355

      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: H449N

      Variant1ClinVarID: 350230

      Variant1CAID: CA2802233

      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: E178K

      Variant1ClinVarID: 2203495

      Variant1CAID: CA355961709

      Variant2: N/A

      Variant2ClinVarID: N/A

      Variant2CAID: N/A

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished: N/A

    8. 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: P385R

      Variant1ClinVarID: 556024

      Variant1CAID: CA355963438

      Variant2: N/A

      Variant2ClinVarID: N/A

      Variant2CAID: N/A

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished: N/A

    9. 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: H240R

      Variant1ClinVarID: 947028

      Variant1CAID: CA355962127

      Variant2: N/A

      Variant2ClinVarID: N/A

      Variant2CAID: N/A

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished: N/A

    10. 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:

      Variant1ClinVarID:

      Variant1CAID: CA355963739

      Variant2: N/A

      Variant2ClinVarID: N/A

      Variant2CAID: N/A

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished: N/A

    11. 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: D315Y

      Variant1ClinVarID:

      Variant1CAID: CA355962740

      Variant2: N/A

      Variant2ClinVarID: N/A

      Variant2CAID: N/A

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished: N/A

    1. patient 2474

      Case#: Patient 2474, male, northern European origin, he was class valedictorian in high school and then a practicing attorney until his intellect deteriorated later in life.

      DiseaseAssertion: MPS1-S, mild

      FamilyInfo: Affected sister with MPS-1 who had a similar or slightly more severe clinical phenotype.

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: Fibroblasts has enabled detection of 0.041 ± 0.008 (n = 6) ng of IDUA protein of total cellular protein/mg (0.13% of normal mean). This gives a calculated specific activity and VmX, of 88 and 102 pmol/min/ng of IDUA toward the fluorogenic and heparin-derived disaccharide substrates, respectively, both of which are in the normal range.

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.590-7G>A (678-7G>A)

      Variant1ClinVarID: 222996

      Variant1CAID: CA356990

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

      Variant2ClinVarID: 11908

      Variant2CAID: CA220498

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. older sibling

      Case#: OS of sibship 1, female, 8 years old (age at diagnosis), 8.8 years old (age at ERT enrollment), 5.4 years (duration of ERT)

      DiseaseAssertion: MPS1-HS

      FamilyInfo: Affected male YS (YS of sibship 1)

      CasePresentingHPOs: HP:0007957, HP:0000943, HP:0002828, HP:0000365, HP:0001263, HP:0001260, HP:0002751 (Corneal opacity, dysostosis, joint contractures, mild hearing impairment, psychomotor delay, speech difficulty, kyphoscoliosis)

      CaseHPOFreeText: Cardiac disease, lung function tests 50% of normal, organomegaly

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: Yes - symptoms present at T1 were stabilized or improved (organomegaly and hearing) at T2, except for worsening of kyphoscoliosis.

      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. younger

      Case#: YS of sibship 4, male, 0.8 years old (age at diagnosis), 1.3 years old (age at ERT enrollment), 3.6 years (duration of ERT)

      DiseaseAssertion: MPS1-HS

      FamilyInfo: Affected male OS (OS of sibship 4)

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

      CaseHPOFreeText: Cardiac disease, progression of respiratory symptoms

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: Yes - Had poor compliance (~60 %) with ERT, which may have impacted the symptom progression.

      CaseBMT: N/A

      Variant1: c.623G>A (p.G208D)

      Variant1ClinVarID: 554590

      Variant1CAID: CA355961948

      Variant2: (p.P520R), Typo, no proline at this position

      Variant2ClinVarID: N/A

      Variant2CAID: N/A

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    3. younger sibling

      Case#: YS of sibship 7, female, 3.3 years old (age at diagnosis), 3.4 years old (age at ERT enrollment), 5.6 years (duration of ERT)

      DiseaseAssertion: MPS1-HS

      FamilyInfo: Affected OS (OS of sibship 7)

      CasePresentingHPOs: HP:0007957, HP:0000943, HP:0002828, HP:0001263, HP:0001270 (Corneal opacity, dysostosis, joint contractures, cognitive impairment, motor impairment)

      CaseHPOFreeText: Cardiac disease, somatic impairment

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: Yes - After 5 years of ERT, cardiac symptoms progressed but remained mild. Corneal clouding progressed as well. At the age of 5, motor development remained normal, and cognitive skills and musculoskeletal disease improved.

      CaseBMT: N/A

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

      Variant1ClinVarID: 11910

      Variant1CAID: CA256112

      Variant2: (L564fsx) No CDNA change provided.

      Variant2ClinVarID: N/A

      Variant2CAID: N/A

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. PKMPS1P6

      Case#: PKMPS1P6, 8 months old (age at presentation), 2 years old (age at report), female, Pakastani

      DiseaseAssertion: MPS-I

      FamilyInfo: Proband's parents were first cousins.

      CasePresentingHPOs: Coarse facial features, recurrent respiratory tract infections, joint stiffness, upper airway obstructive symptoms, mild developmental delay, umbilical hernia (HP:0000256, HP:0002788, HP:0001387, HP:0002781, HP:0001263, HP:0001537)

      CaseHPOFreeText: Widening of the wrist and a stunted, pectus carinatum

      CaseNotHPOs: Visceromegaly (HP:0003271)

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: N/A

      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

    2. PKMPS1P8

      Case#: PKMPS1P8, 10 years old (age at presentation), male, Pakastani

      DiseaseAssertion: MPS-I

      FamilyInfo: Born to consanguineous parents

      CasePresentingHPOs: Coarse facial features, mild developmental delay, short stature, pectus carinatum, genu valgum, corneal clouding (HP:0000256, HP:0001263, HP:0004322, HP:0000768, HP:0002857, HP:0007957)

      CaseHPOFreeText: Difficulty walking since the age of 4 years. Widening of the wrist, underweight, soft abdomen.

      CaseNotHPOs: Visceromegaly (HP:0003271)

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

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

      Variant1ClinVarID:

      Variant1CAID: 11919

      Variant2: CA220503

      Variant2ClinVarID: c.1469T>C (p.L490P)

      Variant2CAID: 11919

      AdditionalVariants: CA220503

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    3. PKMPS1P4

      Case#: PKMPS1P4, 16 months (age of presentation), male, Pakastani

      DiseaseAssertion: MPS-I

      FamilyInfo: Proband was born to a consanguineous family.

      CasePresentingHPOs: Snoring, failure to thrive, developmental delay, coarse facial features, skeletal deformities, umbilical hernia (HP:0025267, HP:0001508, HP:0001263, HP:0000256, HP:0002652, HP:0001537)

      CaseHPOFreeText: Copious nasal secretions, chest infections, underweight, and a liver span of 3 cm.

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: N/A

      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

    4. PKMPS1P5

      Case#: PKMPS1P5, 10 months old (age at presentation), 2 years old (age at report), female, Pakastani

      DiseaseAssertion:MPS-I

      FamilyInfo: Her parents were related

      CasePresentingHPOs: Upper airway obstructive symptoms, stridor, developmental delay, coarse facial features, pneumonia, umbilical hernia, short neck, kyphosis (HP:0002781, HP:0010307, HP:0001263, HP:0000256, HP:0002090, HP:0001537, HP:0000470, HP:0002808)

      CaseHPOFreeText: Copious nasal discharge, widening of the wrist, liver span was 3 cm.

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.784delC (p.H262Tfs*55)

      Variant1ClinVarID: 956890

      Variant1CAID: CA2802083

      Variant2: c.784delC (p.H262Tfs*55)

      Variant2ClinVarID: 956890

      Variant2CAID: CA2802083

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. Hurler disease

      Case#: Patient 17, 3 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: Cardiac disease

      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.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

    2. Hurler disease

      Case#: Patient 6, 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, intellectual disability (HP:0000280, HP:0001433, HP:0002828, HP:0007957, HP:0002719, HP:0000943, HP:0001249)

      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.362T>C (p.Leu121Pro)

      Variant1ClinVarID: 1343382

      Variant1CAID: CA355961174

      Variant2: c.362T>C (p.Leu121Pro)

      Variant2ClinVarID: 1343382

      Variant2CAID: CA355961174

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    3. Hurler disease

      Case#: Patient 54, 8 years old (age at report), female, Indian

      DiseaseAssertion: MPS1-H

      FamilyInfo: N/A

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

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: 2.3% (Range of residual enzyme activity: 0.0%-4.8%)

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.568_581del (p.Asn190His)

      Variant1ClinVarID: 3639714

      Variant1CAID: CA2801994

      Variant2: c.1469T>C (p.Leu490Pro)

      Variant2ClinVarID: 11919

      Variant2CAID: CA220503

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    4. Hurler disease

      Case#: Patient 31, 6 years old (age at report), male, Indian

      DiseaseAssertion: MPS1-H

      FamilyInfo: Sibling of Patient 32

      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: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: 3.0% (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

    5. Hurler disease

      Case#: Patient 12, 7 years old (age at report), female, Indian

      DiseaseAssertion: MPS1-H

      FamilyInfo: N/A

      CasePresentingHPOs: Coarse facial features, hepatosplenomegaly, joint contractures, intellectual disability (HP:0000280, HP:0001433, HP:0002828, HP:0001249)

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

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

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.532G>A (p.Glu178Lys)

      Variant1ClinVarID: 2203495

      Variant1CAID: CA355961709

      Variant2: c.532G>A (p.Glu178Lys)

      Variant2ClinVarID: 2203495

      Variant2CAID: CA355961709

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    6. Hurler disease

      Case#: Patient 23, 9 months old (age at report), female, Indian

      DiseaseAssertion: MPS1-H

      FamilyInfo: N/A

      CasePresentingHPOs: Intellectual disability (HP:0001249)

      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.1029C>A (p.Tyr353Ter)

      Variant1ClinVarID: 222997

      Variant1CAID: CA356984

      Variant2: c.1029C>A (p.Tyr353Ter)

      Variant2ClinVarID: 222997

      Variant2CAID: CA356984

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    7. Hurler disease

      Case#: Patient 14, 5 years old (age at report), male, Indian

      DiseaseAssertion: MPS1-H

      FamilyInfo: N/A

      CasePresentingHPOs: Coarse facial features, hepatosplenomegaly, corneal clouding, recurrent infections, hernia (HP:0000280, HP:0001433, HP:0007957, HP:0002719, HP:0100790)

      CaseHPOFreeText: Cardiac disease

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: 2.8% (Range of residual enzyme activity: 0.0%-4.8%)

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.543T>G (p.Asn181Lys)

      Variant1ClinVarID: N/A

      Variant1CAID: CA355961734

      Variant2: c.543T>G (p.Asn181Lys)

      Variant2ClinVarID: N/A

      Variant2CAID: CA355961734

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. 33

      Case#: Patient 33 (Table 3)

      DiseaseAssertion: Attenuated naïve MPS 1

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: 3 nmol/h/mg per DBS (dried blood spots) determined during NBS. 13.2 DBS protein concentration determined by Immuno-SRM (pmol/L).

      CaseUrineGAGs: N/A

      CaseERT: Yes

      CaseBMT: N/A

      Variant1: c.1577T>C (p.L526P)

      Variant1ClinVarID: 567566

      Variant1CAID: CA2802300

      Variant2: c.1577T>C (p.L526P)

      Variant2ClinVarID: 567566

      Variant2CAID: CA2802300

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    2. 29

      Case#: Patient 29 (Table 3)

      DiseaseAssertion: Severe naïve MPS 1

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: <1 nmol/h/mg per DBS (dried blood spots) determined during NBS

      CaseUrineGAGs: N/A

      CaseERT: Yes

      CaseBMT: N/A

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

      Variant1ClinVarID: 11908

      Variant1CAID: CA220498

      Variant2: c.1524+1G>T

      Variant2ClinVarID: 555169

      Variant2CAID: CA355964830

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    3. 32

      Case#: Patient 32 (Table 3)

      DiseaseAssertion: Moderate naïve MPS 1

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: Yes

      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

    4. 41

      Case#: Patient 41 (Table 3)

      DiseaseAssertion: Moderate MPS 1

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: 77.5 DBS protein concentration determined by Immuno-SRM (pmol/L).

      CaseUrineGAGs: N/A

      CaseERT: Yes

      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

    1. P4

      Case#: P4, Male, 13 years (diagnosed), 16.1 (report), 38 kg (weight), 146 cm (height), Algerian

      DiseaseAssertion: Scheie Syndrome

      FamilyInfo: Parents are consanguineous

      CasePresentingHPOs: HP:0001999, HP:0000943, HP:0002240, HP:0002240, HP:0001387, HP:0007957 (Facial Dysmorphic Features, Multiple Dysostosis, Joint Stiffness, Hepatomegaly, Hernia(Ombelical), Corneal Opacity)

      CaseHPOFreeText: Cardiac Manifestations(Mitral Stenosis & Aortic Insufficiency)

      CaseNotHPOs: HP:0001249, HP:0000238 (Mental Retardation, Hydrocephalus)

      CaseNotHPOFreeText: Chronic Rhinorrhea

      CaseEnzymeAssay: IDUA Enzyme activity 7 (% to the reference range mean)

      CaseUrineGAGs: GAG quantitation 18 (fold change to the reference range mean according to age)

      CaseERT: N/A

      CaseBMT: N/A

      GenotypingMethod: Direct DNA Fragments Sequencing

      Variant1: c.1598C>G (p.Pro533Arg)

      Variant1ClinVarID: 11910

      Variant1CAID: CA256112

      Variant2: c.1598C>G (p.Pro533Arg)

      Variant2ClinVarID: 11910

      Variant2CAID: CA256112

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    2. P12

      Case#: P12, Male, 2.6 years (diagnosed), 9.6 (report), Algerian

      DiseaseAssertion: Hurler Syndrome

      FamilyInfo: Parents are not consanguineous

      CasePresentingHPOs: HP:0001249, HP:0001999, HP:0000943, HP:0001387, HP:0001433, HP:0001387, HP:0000238 (Mental Retardation, Facial Dysmorphic Features, Multiple Dysostosis, Joint Stiffness, Hepatosplenomegaly, Hernia(Ombelical), Hydrocephalus)

      CaseHPOFreeText: Chronic Rhinorrhea

      CaseNotHPOs: HP:0007957 (Corneal Opacity)

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: IDUA Enzyme activity 0 (% to the reference range mean)

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      GenotypingMethod: Direct DNA Fragments Sequencing

      Variant1: c.1598C>G (p.Pro533Arg)

      Variant1ClinVarID: 11910

      Variant1CAID: CA256112

      Variant2:c.1743C>G (p.Tyr581*)

      Variant2ClinVarID: 550883

      Variant2CAID: CA2802392

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. Case#: Patient 9, 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.1598C>T (p.P533L)

      Variant1ClinVarID: 429205

      Variant1CAID: CA355965029

      Variant2: c.1598C>T (p.P533L)

      Variant2ClinVarID: 429205

      Variant2CAID: CA355965029

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    2. Case#: Patient 6, 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.793-5C>A (homozygous)

      Variant1ClinVarID: N/A

      Variant1CAID: CA3250086379

      Variant2: c.793-6C>G (homozygous)

      Variant2ClinVarID: N/A

      Variant2CAID: CA2739858898

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. Patient 6

      Case#: Patient 6, Male, 1 year (diagnosed), 2 years (report), Djerba Island (Tunisian origin)

      DiseaseAssertion: N/A

      FamilyInfo: Parents are consanguineous between 2nd cousins

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: Leukocyte IDUA activity 0.3% (% normal) ; determined in sonicated leukocyte pellets using the artificial substrate 4-methylumbellifery IDUA

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      GenotypingMethod: Sequencing exons and intro-exon junctions; Phenol/chloroform procedure

      Variant1: p.P533R

      Variant1ClinVarID: 11910

      Variant1CAID: CA256112

      Variant2: p.P533R

      Variant2ClinVarID: 11910

      Variant2CAID: CA256112

      AdditionalVariants: p.A8A (c.24 A > C, p.A20A (c.60G > A); p.Q433Q (c.99T > G), IVS2-44 (c.300 44C > T); p.R105Q (c.314G > A); p.N181N (c.543 T > C), IVS5-45 (c.590-45G > C); IVS5-8 (c.590- 8C > T); p.A314A (c.942G > C); IVS7+48 (c.972+48A > G), IVS7-45 (c.973-45 G > C; p.A361 (Tc.1081G > A); p.T388T (c.116G > C); p.V454I (c.1360G > A); IVS9+36 (c.1402+36T > C), p.R489R (c.1467C > T), IVS12+72 (c.1727T > G), 3'UTR+44 (c.1962+44G > C).

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    2. Patient 3

      Case#: Patient 3, Male, 2 years (diagnosed), 12 years (report), Sfax (Tunisian origin)

      DiseaseAssertion: N/A

      FamilyInfo: Parents are consanguineous between 3rd cousins

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: Leukocyte IDUA activity 0.2% (% normal) ; determined in sonicated leukocyte pellets using the artificial substrate 4-methylumbellifery IDUA

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      GenotypingMethod: Sequencing exons and intro-exon junctions; Phenol/chloroform procedure

      Variant1: p.P533R

      Variant1ClinVarID: 11910

      Variant1CAID: CA256112

      Variant2: p.P533R

      Variant2ClinVarID: 11910

      Variant2CAID: CA256112

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. c.523_534delTGGAACTTCGAG

      Case#: No additional case information provided

      DiseaseAssertion: MPSI-H/S

      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.523_534delTGGAACTTCGAG (p.Trp175_Glu178del)

      Variant1ClinVarID: 2734635

      Variant1CAID: CA645372297

      Variant2: c.523_534delTGGAACTTCGAG (p.Trp175_Glu178del)

      Variant2ClinVarID: 2734635

      Variant2CAID: CA645372297

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    2. c.784_784delC

      Case#: No additional case information provided

      DiseaseAssertion: MPSI-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.784_784delC (p.H262TfsTer55)

      Variant1ClinVarID: 956890

      Variant1CAID: CA2802083

      Variant2: c.784_784delC (p.H262TfsTer55)

      Variant2ClinVarID: 956890

      Variant2CAID: CA2802083

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    3. c.158+1G > A

      Case#: No additional case information provided

      DiseaseAssertion: MPSI-H

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: 0.13 umol/g hr, reference range 10–50 umol/g hr.

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.158+1G>A

      Variant1ClinVarID: 526835

      Variant1CAID: CA355945713

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

      Variant2ClinVarID: 11908

      Variant2CAID: CA220498

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    4. c.17_24dupCCCGCGCC

      Case#: No additional case information provided

      DiseaseAssertion: MPSI-H/S

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: 0.4 umol/g hr, reference range 10–50 umol/g hr.

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.17_24dupCCCGCGCC (p.Ala9ProfsTer102)

      Variant1ClinVarID: N/A

      Variant1CAID: CA645372294

      Variant2: c.1871A>T (p.D624V)

      Variant2ClinVarID: N/A

      Variant2CAID: CA355965955

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    5. c.36_44delGCTCCTGGC

      Case#: No additional case information provided

      DiseaseAssertion: MPSI-H

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: 0.05 umol/g hr, reference range 10–50 umol/g hr.

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.36_44delGCTCCTGGC (p.Leu13_Ala15del)

      Variant1ClinVarID: 3720558

      Variant1CAID: CA645372295

      Variant2: c.1205G>A (W402X)

      Variant2ClinVarID: 11908

      Variant2CAID: CA220498

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. 6

      Case#: Patient 6 (see Table 2), 33 weeks, 6 days (Gestational age)

      DiseaseAssertion: MPS1-H

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: 0.47 nmol x mg-1 × hr-1

      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: CA356986

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    2. 8

      Case#: Patient 8 (see Table 2), 38 weeks (Gestational age)

      DiseaseAssertion: MPS1-H

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: Upper respiratory tract involvement

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: 0.58 nmol x mg-1 × hr-1

      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: CA356986

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    3. 191

      Case#: Patient 19 (see Table 2), 38 weeks (Gestational age)

      DiseaseAssertion: MPS1-H/S

      FamilyInfo: Sibling of Patient 20 (see Table 2)

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: Inguinal hernia (HP:0000023)

      CaseNotHPOFreeText: Upper respiratory tract involvement

      CaseEnzymeAssay: 0.92 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

    4. 3

      Case#: Patient 3 (see Table 2), 40 weeks (Gestational age)

      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.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

    5. 24

      Case#: Patient 24 (see Table 2), 40 weeks (Gestational age)

      DiseaseAssertion: MPS1-S

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: Inguinal hernia (HP:0000023)

      CaseNotHPOFreeText: Upper respiratory tract involvement

      CaseEnzymeAssay: 1.05 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.1148G>A (p.R383H)

      Variant2ClinVarID: 558189

      Variant2CAID: CA:2802205

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. Patient 1

      Case#: Patient 1, Chinese descent, 7 years old (age at report), born via normal pregnancy and delivery, height of 96 cm (<3rd percentile), weight of 22.5 kg (25th-50th percentile).

      DiseaseAssertion: MPS 1

      FamilyInfo: The third child of non-consanguineous parents. Affected older sister (Patient 2).

      CasePresentingHPOs: Short stature, skeletal dysplasia, joint stiffness, claw hand deformity, coarse facial features, prominent forehead, wide nose, flared nostrils, thick lips, inguinal hernia, visual impairment (HP:0004322, HP:0002652, HP:0001387, HP:0034337, HP:0000280, HP:0011220, HP:0000445, HP:0000454, HP:0000219, HP:0000023, HP:0000505)

      CaseHPOFreeText: Corneal edema with diffuse granular opacity, central corneal thickness

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.2T>C (p.M1?)

      Variant1ClinVarID: 639529

      Variant1CAID: CA2801095

      Variant2: c.911delT (p.V304fs)

      Variant2ClinVarID: 1184991

      Variant2CAID: CA2573052265

      AdditionalVariants: N/A

      ParentalGenotype: Paternal: c.2T>C, Maternal: c.911delT

      PreviouslyPublished N/A

    1. 6/m

      Case#: 6, 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. c.547C>T

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

      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.547C>T (p.P183S)

      Variant1ClinVarID: 2432770

      Variant1CAID: CA2801989

      Variant2: N/A

      Variant2ClinVarID: N/A

      Variant2CAID: N/A

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    2. c.1225G>C

      Case#: Functional assay variant with a clinical significance of clinically benign.

      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.1225G>C (p.G409R)

      Variant1ClinVarID: 92627

      Variant1CAID: CA248659

      Variant2: N/A

      Variant2ClinVarID: N/A

      Variant2CAID: N/A

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    3. c.1898C>T

      Case#: Functional assay variant with a clinical significance of 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.1898C>T (p.S633L)

      Variant1ClinVarID: 556406

      Variant1CAID: CA355966010

      Variant2: N/A

      Variant2ClinVarID: N/A

      Variant2CAID: N/A

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    4. c.794G>A

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

      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.794G>A (p.G265D)

      Variant1ClinVarID: 2203496

      Variant1CAID: CA91168317

      Variant2: N/A

      Variant2ClinVarID: N/A

      Variant2CAID: N/A

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. 9/M

      Case#: Patient 9, male, Han origin, 8 years old (age at diagnosis)

      DiseaseAssertion: MPS1-H/S

      FamilyInfo: N/A

      CasePresentingHPOs: Joint stiffness, Hepatosplenomegaly, Airway obstruction (HP:0001387, HP:0001433, HP:0006536)

      CaseHPOFreeText: N/A

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

      CaseNotHPOFreeText: Cardiac disease

      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.1037T>G (p.L346R)

      Variant1ClinVarID: 11927

      Variant1CAID: CA256128

      Variant2: c.156C>G (p.F52L)

      Variant2ClinVarID: 554280

      Variant2CAID: CA355945700

      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

    2. 25/M

      Case#: Patient 25, male, Han origin, 10 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 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.1037T>G (p.L346R)

      Variant1ClinVarID: 11927

      Variant1CAID: CA256128

      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 by parental testing.

      PreviouslyPublished N/A

    3. 56/M

      Case#: Patient 56, male, Han origin, 3 years old (age at diagnosis)

      DiseaseAssertion: MPS1-H/S

      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 0.8 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.1037T>G (p.L346R)

      Variant1ClinVarID: 11927

      Variant1CAID: CA256128

      Variant2: c.1210G>T (p.E404X)

      Variant2ClinVarID: 552095

      Variant2CAID: N/A

      AdditionalVariants: N/A

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

      PreviouslyPublished N/A

    4. 49/M

      Case#: Patient 49, male, Han origin, 7 years old (age at diagnosis)

      DiseaseAssertion: MPS1-H/S

      FamilyInfo: N/A

      CasePresentingHPOs: Macrocephaly, Joint stiffness, Mongolian macula, Hepatosplenomegaly (HP:0000256, HP:0001387, HP:0011369, HP:0001433)

      CaseHPOFreeText: N/A

      CaseNotHPOs: Global Developmental Delay, Hernia, Airway obstruction (HP:0001263, HP:0100790, HP:0006536)

      CaseNotHPOFreeText: Cardiac disease

      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.236C>T (p.A79V)

      Variant1ClinVarID: 1458769

      Variant1CAID: CA356987

      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

    5. 19/M

      Case#: Patient 19, male, Han origin, 5 years old (age at diagnosis)

      DiseaseAssertion: MPS1-H/S

      FamilyInfo: N/A

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

      CaseHPOFreeText: Cardiac disease

      CaseNotHPOs: Global Developmental Delay (HP:0001263)

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: IDUA activity 1.0 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.296+4G>A, it looks like this is a typo and should be c.299+4G>A

      Variant1ClinVarID: N/A

      Variant1CAID: CA2669476183

      Variant2: 668insGCG, it looks like this should be c.665_667dup

      Variant2ClinVarID: N/A

      Variant2CAID: CA2586965942

      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. 41/M

      Case#: Patient 41, male, Han origin, 2 years 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 1.4 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.792+1G>C

      Variant1ClinVarID: N/A

      Variant1CAID: CA355962280

      Variant2: c.1-2C>G

      Variant2ClinVarID: N/A

      Variant2CAID: CA2586973510

      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

    7. 5/F

      Case#: Patient 5, female, Han origin, 11 years old (age at diagnosis)

      DiseaseAssertion: MPS1-H/S

      FamilyInfo: N/A

      CasePresentingHPOs: Macrocephaly, Joint stiffness, Mongolian macula, Hepatosplenomegaly, Airway obstruction (HP:0000256, HP:0001387, HP:0011369, HP:0001433, HP:0006536)

      CaseHPOFreeText: Cardiac disease

      CaseNotHPOs: Global Developmental Delay, Hernia (HP:0001263, HP:0100790)

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: IDUA activity 1.3 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.536C>G (p.T179R)

      Variant1ClinVarID: 556358

      Variant1CAID: CA355961718

      Variant2: c.1898C>T (p.S633L)

      Variant2ClinVarID: 556406

      Variant2CAID: CA355966010

      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

    8. 20/M

      Case#: Patient 20, male, Han origin, 4 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: N/A

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

      CaseNotHPOFreeText: Cardiac disease

      CaseEnzymeAssay: IDUA activity 0.5 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.1877G>A (p.W626X)

      Variant1ClinVarID: 928997

      Variant1CAID: CA355965968

      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

    9. 32/M

      Case#: Patient 32, male, Han origin, 1 year 5 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 1.0 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.1146dupG (Paper refers to the variant as c.1147dupG, there is a typo in the article where all duplication variants are one base pair off)

      Variant1ClinVarID: N/A

      Variant1CAID: CA2586965958

      Variant2: c.46_57del12 (p.Ser16_Ala19del)

      Variant2ClinVarID: 92643

      Variant2CAID: CA220509

      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

    10. 45/M

      Case#: Patient 45, male, Han origin, 8 years old (age at diagnosis)

      DiseaseAssertion: MPS1-H/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 1.1 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.1037T>G (p.L346R)

      Variant1ClinVarID: 11927

      Variant1CAID: CA256128

      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 by parental testing.

      PreviouslyPublished N/A

    1. Case#: NC-700 ID number, Table S1.1 of Supplementary Material. Female, 8 months old (age at first symptoms), 1 year and 2 months old (age at diagnosis). Stored ambient 1.7 yr.

      DiseaseAssertion: Severe MPS-I

      FamilyInfo: N/A

      CasePresentingHPOs: Recurrent ear infections, kyphosis, gross motor delay, hearing loss, corneal clouding (HP:0410018, HP:0002808, HP:0002194, HP:0000365, HP:0007957)

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: 1142 fmol/punch

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.1032C>G (p.Y344X) is included in the table but according to the CilnGen allele registry, this genotype does not exist.

      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. Case#: CA-112 ID number, Table S1.1 of Supplementary Material. Male, 2 weeks old (age at first symptoms), 7 months old (age at diagnosis). Stored frozen (-20ºC) 16 yr

      DiseaseAssertion: Severe MPS-I

      FamilyInfo: N/A

      CasePresentingHPOs: Megalocornea, recurrent ear infections, hernia (groin), corneal clouding, joint stiffness (HP:0000485, HP:0410018, HP:0100790, HP:0007957, HP:0001387)

      CaseHPOFreeText: Aortic/mitra valve regurgitation

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: 1352 fmol/punch

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.1861C>T (p.R621X)

      Variant1ClinVarID: 11917

      Variant1CAID: CA256118

      Variant2: c.1163C>G (p.T388R)

      Variant2ClinVarID: 496384

      Variant2CAID: CA91169370

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    3. Case#: IL-5b ID number, Table S1.1 of Supplementary Material. Additional PHI not provided.

      DiseaseAssertion: Attenuated MPS-I

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: 1211 fmol/punch

      CaseERT: N/A

      CaseBMT: N/A

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

      Variant1ClinVarID: 11909

      Variant1CAID: CA204563

      Variant2: c.793G>A (p.G265R)

      Variant2ClinVarID: 638074

      Variant2CAID: CA2802098

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    4. Case#: CA-119 ID number, Table S1.1 of Supplementary Material. Male, at birth (age at first symptoms), 15 years and 6 months old (age at diagnosis). Stored frozen (-20ºC) 32 yr. May be the sibling of CA-120 due to closeness in ID numbers as well as having the same variants.

      DiseaseAssertion: Attenuated MPS-I

      FamilyInfo: N/A

      CasePresentingHPOs: Premature birth, hernia (3), ear infections, joint contractures (HP:0001622, HP:0100790, HP:0410018, HP:0002828)

      CaseHPOFreeText: Lung issues, hernia, spine heart (No additional information about these symptoms provided)

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: 393 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. 29

      Case#: Patient 29, female, 1 year 6 months (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.1855C>T (p.R619X)

      Variant1ClinVarID: 280976

      Variant1CAID: CA2802455

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

      Variant2ClinVarID: 280976

      Variant2CAID: CA2802455

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    2. 11

      Case#: Patient 11, female, 1 year and 2 months (age at presentation).

      DiseaseAssertion: MPS1-H/S

      FamilyInfo: Consanguinity in the family present for this patient.

      CasePresentingHPOs: Corneal clouding, coarse facial features, dystosis multiplex, hepatomegaly, joint stiffness, extensive Mongolian spots, splenomegaly, umbilical hernia (HP:0007957, HP:0000256, HP:0000943, HP:0002240, HP:0001387,HP:0011369, 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.757G>T (p.G253C)

      Variant1ClinVarID: 554213

      Variant1CAID: CA2802076

      Variant2: c.757G>T (p.G253C)

      Variant2ClinVarID: 554213

      Variant2CAID: CA2802076

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    3. 24

      Case#: Patient 24, female, 15 months (age at presentation).

      DiseaseAssertion: MPS1-H

      FamilyInfo: Consanguinity in the family present for this patient.

      CasePresentingHPOs: Coarse facial features, global developmental delay, joint contractures (HP:0000256, HP:0001263, HP:0100790)

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.1759C>T (p.Q587X)

      Variant1ClinVarID: 2630132

      Variant1CAID: CA355965402

      Variant2: c.1759C>T (p.Q587X)

      Variant2ClinVarID: 2630132

      Variant2CAID: CA355965402

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    4. 8

      Case#: Patient 8, female, 5 months (age at presentation).

      DiseaseAssertion: MPS1-H

      FamilyInfo: Consanguinity in the family not present for this patient.

      CasePresentingHPOs: Corneal clouding, coarse facial features, dysostosis multiplex, global developmental delay, hepatomegaly, joint stiffness, splenomegaly (HP:0007957, HP:0000256, HP:0000943, HP:0001263, HP:0002240, HP:0001387, 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.362T>C (p.L121P)

      Variant1ClinVarID: 1343382

      Variant1CAID: CA355961174

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

      Variant2ClinVarID: 1343382

      Variant2CAID: CA355961174

      AdditionalVariants: N/A

      ParentalGenotype: Mother and father are both carriers

      PreviouslyPublished N/A

    5. 17

      Case#: Patient 17, male, 4 years (age at presentation).

      DiseaseAssertion: MPS1-H

      FamilyInfo: Consanguinity in the family not present for this patient.

      CasePresentingHPOs: Corneal clouding, coarse facial features, dystosis multiplex, global developmental delay, hepatomegaly, joint stiffness, splenomegaly, recurrent respiratory infection, 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.1115A>G (p.N372S)

      Variant1ClinVarID: 554765

      Variant1CAID: CA355963365

      Variant2: c.1160T>C (p.L387P)

      Variant2ClinVarID: 556106

      Variant2CAID: CA355963451

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. M2)

      Case#: Patient M2, Muslim religious group, located in lower Galilee.

      DiseaseAssertion: MPS1-H

      FamilyInfo: Parents of M2 were found to be heterozygous for this mutation.

      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.1096A>C (p.T366P)

      Variant1ClinVarID: 11916

      Variant1CAID: CA:256117

      Variant2: N/A

      Variant2ClinVarID: N/A

      Variant2CAID: N/A

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. distinct mutant IDUA alleles

      Case#: Patient 73, Spain

      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.574delT (p.Ser192ProfsTer2)

      Variant1ClinVarID: N/A

      Variant1CAID: CA2586973521

      Variant2: c.574delT (p.Ser192ProfsTer2)

      Variant2ClinVarID: N/A

      Variant2CAID: CA2586973521

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    2. splicing mutations

      Case#: Patient 83, Turkey

      DiseaseAssertion: MPS1-H/S

      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.493+1G>A

      Variant1ClinVarID: 558143

      Variant1CAID: CA355961625

      Variant2: c.493+1G>A

      Variant2ClinVarID: 558143

      Variant2CAID: CA355961625

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    3. missense mutations

      Case#: Patient 69, Spain

      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.1205G>A (p.W402X)

      Variant1ClinVarID: 11908

      Variant1CAID: CA220498

      Variant2: c.1187T>C (p.L396P)

      Variant2ClinVarID: 4689688

      Variant2CAID: CA355963499

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    4. distinct mutant IDUA alleles

      Case#: Patient 91, Turkey

      DiseaseAssertion: MPS1-H/S

      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.1727+6T>A

      Variant1ClinVarID: 2203499

      Variant1CAID: CA2580070698

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

      Variant2ClinVarID: 11909

      Variant2CAID: CA204563

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    5. distinct mutant IDUA alleles

      Case#: Patient 93, Turkey

      DiseaseAssertion: MPS1-S

      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.826G>A (p.E276K)

      Variant1ClinVarID: 3233261

      Variant1CAID: CA355962355

      Variant2: c.826G>A (p.E276K)

      Variant2ClinVarID: 3233261

      Variant2CAID: CA355962355

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    6. distinct mutant IDUA alleles

      Case#: Patient 71, Spain

      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.208C>T (p.Q70X)

      Variant1ClinVarID: 11909

      Variant1CAID: CA204563

      Variant2: c.1190-1delG

      Variant2ClinVarID: 2734639

      Variant2CAID: CA2586965967

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    7. distinct mutant IDUA alleles

      Case#: Patient 99, Turkey

      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.1650+5G>C

      Variant1ClinVarID: N/A

      Variant1CAID: CA913187450

      Variant2: c.1893delC

      Variant2ClinVarID: 495733

      Variant2CAID: CA658683377

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. 2

      Case#: Patient 2, female

      DiseaseAssertion: MPS I

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: Low IDUA enzyme activity 21.60 (Ref. 4.87 ~ 54.70 μmol/g protein/h)

      CaseUrineGAGs: Negative GAG tests

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.76G>A (p.A26T)

      Variant1ClinVarID: 712785

      Variant1CAID: CA280110

      Variant2: c.911delT (p.V304Gfs*13)

      Variant2ClinVarID: 1184991

      Variant2CAID: CA2573052265

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. group of patients

      Case#: Patient A

      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.1651-1G>T

      Variant2ClinVarID: N/A

      Variant2CAID: CA355965149

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. Hurler

      Case#: 0.6% residual activity at 37 °C

      DiseaseAssertion: MPS1-H

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: 1.6 ± 0.2 nmol/mg/h IDUA activity at 37 °C

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.653T>C (p.L238Q)

      Variant1ClinVarID: 222995

      Variant1CAID: CA356986

      Variant2: c.653T>C (p.L238Q)

      ClinVarID: 222995

      Variant2CAID: CA356986

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. 101

      Case#: Pt 101 , Age 28 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.R89Q Variant1ClinVarID: 11922 Variant1CAID:CA256124 Variant2:p.W402X Variant2ClinVarID:11910 Variant2CAID:CA256112 AdditionalVariants: NA ParentalGenotype: NA PreviouslyPublished:NA

    2. 216

      Case#: 216 7.8 yrs male, age at initial diagnosis 0.7 yrs DiseaseAssertion: MPS IH FamilyInfo:Nil CasePresentingHPOs: CaseHPOFreeText: CaseNotHPOs: CaseNotHPOFreeText: CaseEnzymeAssay: IDUA activity: low leukocyte IDUA enzyme activity CaseUrineGAGs: CaseERT: 5.6 yrs, then study drug, valanafusp alpha, also called AGT-181 for 12 months

      CaseBMT: No PreviouslyPublished Don't know Variant1:p.P533R Variant1ClinVarID: 11910 Variant1CAID: CA256112 Variant2:p.G208D Variant2ClinVarID: 554590 Variant2CAID:

    3. 214

      Case#: 214 2 yrs male, age at initial diagnosis 1.8 yrs DiseaseAssertion: MPS IH FamilyInfo:Nil CasePresentingHPOs: CaseHPOFreeText: CaseNotHPOs: CaseNotHPOFreeText: CaseEnzymeAssay: IDUA activity: low leukocyte IDUA enzyme activity CaseUrineGAGs: CaseERT: 12 yrs, then study drug, valanafusp alpha, also called AGT-181 for 12 months Variant1: p.W402X Variant1ClinVarID: 11908 Variant1CAID: CA220498 Variant2:p.W402X Variant2ClinVarID: 11908 Variant2CAID: CA220498 AdditionalVariants: NA ParentalGenotype: NA PreviouslyPublished:NA

    1. 5

      Case#: Patient 5 (see Table 2), female, 17.8 years old (age at report), 0.3 years (duration of treatment), 7 surgeries

      DiseaseAssertion: MPS1-HS

      FamilyInfo: N/A

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

      CaseHPOFreeText: Shunt placement, psychiatric problems

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: Yes

      CaseBMT: N/A

      Variant1: c.712T>A (p.L238Q) CDNA and protein change do not match. Known variant p.L238Q has a CDNA change of c.713T>A.

      Variant1ClinVarID: 265418

      Variant1CAID: CA2802065

      Variant2: c.1208G>A (p.W402X)

      Variant2ClinVarID: 11908

      Variant2CAID: CA220498

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    2. 11

      Case#: Patient 11 (see Table 2), male, 19 years old (age at report), 9.4 years (duration of treatment), 8 surgeries

      DiseaseAssertion: MPS1-HS

      FamilyInfo: N/A

      CasePresentingHPOs: HP:0000238, HP:0002176 (Hydrocephalus, Spinal cord compression)

      CaseHPOFreeText:

      CaseNotHPOs: HP:0002360 (sleep abnormality)

      CaseNotHPOFreeText: Shunt placement, psychiatric problems

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: Yes

      CaseBMT: N/A

      Variant1: c.265C>T (p.R89W)

      Variant1ClinVarID: 580286

      Variant1CAID: CA2801156

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

      Variant2ClinVarID: 11908

      Variant2CAID: CA220498

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    3. 9

      Case#: Patient 9 (see Table 2), male, 12.7 years old (age at report), 7 years (duration of treatment), 7 surgeries

      DiseaseAssertion: MPS1-HS

      FamilyInfo: N/A

      CasePresentingHPOs:

      CaseHPOFreeText:

      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: c.1139A>G (p.Q380R)

      Variant1ClinVarID: 550799

      Variant1CAID: CA2802202

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

      Variant2ClinVarID: 11909

      Variant2CAID: CA204563

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. Case#: Patient 9, 4 years old, Iranian

      DiseaseAssertion: MPS1-S (Attenuated)

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: 0.19 µmol/g.h (Normal ranges: 10-50 µmol/g.h)

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.903C>G (p.D301E)

      Variant1ClinVarID: 1458511

      Variant1CAID: CA355962528

      Variant2: c.903C>G (p.D301E)

      Variant2ClinVarID: 1458511

      Variant2CAID: CA355962528

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. 590.330 (4.3)7.9DS 4.5homozygous PD: c.235G>A; p.A79TNormal examinationHS 4.9homozygous PD: c.296C>T; p.T99I

      Case#:Patient Sample unique ID 59, 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 0.330 (4.3) umol/L/h (%DMA) during new born screening through dried blood spot (plasma) and 7.9 pmol/punch/h Confirmatory IDUA enzyme

      CaseUrineGAGs: DS 4.5 g/mol creatinine and HS 4.9 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. 460.598 (7.7)8.1DS 4.0homozygous PD: c.235G>A; p.A79TNormal examinationHS 4.4homozygous PD: c.296C>T; p.T99I

      Case#:Patient Sample unique ID 46, 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 0.598 (7.7) umol/L/h (%DMA) during new born screening through dried blood spot (plasma) and 8.1 pmol/punch/h Confirmatory IDUA enzyme

      CaseUrineGAGs: DS 4.0 g/mol creatinine and HS 2.7 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

    3. 540.309 (3.7)N/A‡DS 3.4heterozygous PD: c.235G>A; p.A79TNot examined at UNC-CHHS 2.8heterozygous PD: c.296C>T; p.T99Iheterozygous PD: c.667G>A; p.D223N

      Case#:Patient Sample unique ID 54, 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 0.309 (3.7) umol/L/h (%DMA) during new born screening through dried blood spot (plasma) and N/A pmol/punch/h Confirmatory IDUA enzyme

      CaseUrineGAGs: DS 3.4 g/mol creatinine and HS 2.8 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: heterozygous PD: c.667G>A; p.D223N (ClinVarID: 2220838, CAID: CA363422841)

      ParentalGenotype:None provided

      PreviouslyPublished:N/A

    4. 680.454 (5.9)7.3DS 7.2homozygous PD: c.235G>A; p.A79TLung disease of prematurity, inguinal hernia, dolichocephalyHS 4.1heterozygous PD: c.296C>T; p.T99I

      Case#:Patient Sample unique ID 68, 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:Presented with HPOs related to being born premature.

      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 0.454 (5.9) umol/L/h (%DMA) during new born screening through dried blood spot (plasma) and 7.3 pmol/punch/h Confirmatory IDUA enzyme

      CaseUrineGAGs: DS 7.2 g/mol creatinine and HS 4.1 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

    1. Abnormal

      Case#: No additional case information provided

      DiseaseAssertion: MPSI-H

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: Abnormal

      CaseUrineGAGs: Abnormal

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.1861C>T (p.R621X)

      Variant1ClinVarID: 11917

      Variant1CAID: CA256118

      Variant2: c.1861C>T (p.R621X)

      Variant2ClinVarID: 11917

      Variant2CAID: CA256118

      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.1504C>T (p.R502W)

      Variant1ClinVarID: 2070831

      Variant1CAID: CA2802280

      Variant2: c.1504C>T (p.R502W)

      Variant2ClinVarID: 2070831

      Variant2CAID: CA2802280

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    3. 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.1163C>T (p.T388M)

      Variant1ClinVarID: 558615

      Variant1CAID: CA355963455

      Variant2: c.1163C>T (p.T388M)

      Variant2ClinVarID: 558615

      Variant2CAID: CA355963455

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    4. 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.1855C>T (p.R619X)

      Variant1ClinVarID: 280976

      Variant1CAID: CA2802455

      Variant2: c.1169T>C (p.M390T)

      Variant2ClinVarID: 1496867

      Variant2CAID: CA355963466

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. 20026495

      Case#: Patient M (male) is an Italian boy who was diagnosed with MPS I by enzyme assay at 3 days of age. His weight was 7.5 kg (75th percentile), length was 67.0 cm (90th percentile), and head circumference was 43.0 cm (75th percentile).

      DiseaseAssertion: MPS1-H/S

      FamilyInfo: The patient is a younger asymptomatic sibling who was diagnosed with the disease because of his older affected sister. Two months before patient M birth, his 4.5-year-old sister, patient F, had been diagnosed with the Hurler-Scheie form of MPS I on the basis of clinical findings, an elevated urinary glycosaminoglycan level, and low α-l-iduronidase activity in leukocytes.

      CasePresentingHPOs: Corneal clouding (HP:0007957)

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: He did not develop coarse facial features, joint disease, or organomegaly, and he has shown no evidence of cardiac disease or skeletal abnormalities. He has shown no signs of dysostosis multiplex on radiographs, and his heart valves functioned normally and were not thickened or dysplastic.

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: 651.7 μg/mg creatinine (normal value for age: 30–200 μg/mg); predominance of heparan sulfate and dermatan sulfate. Urinary glycosaminoglycan excretion decreased to normal levels for age within 4 months of therapy, with complete disappearance of dermatan and heparan sulfate bands on electrophoresis.

      CaseERT: Yes - started laronidase at the age of 5 months. Weekly intravenous infusions of laronidase, at the standard dose of 100 U/kg of body weight. Over the following 5 years, treatment was administered regularly (only 3 infusions were missed), and it was well tolerated without any significant adverse effects.

      CaseBMT: N/A

      Variant1: c.12205G>A (p.W402X)

      Variant1ClinVarID: 11908

      Variant1CAID: CA220498

      Variant2: c.1603C>T (p.L535F)

      Variant2ClinVarID: 638076

      Variant2CAID: CA355965038

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. c.854delC

      Case#: Patient 1, Egyptian, female, 1.5 years old

      DiseaseAssertion: MPS1-H

      FamilyInfo: Parents were 1st cousins

      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.766del (c.854delC is the nomenclature in the literature but it is not current)

      Variant1ClinVarID: N/A

      Variant1CAID: CA2499922676

      Variant2: c.766del (c.854delC is the nomenclature in the literature but it is not current)

      Variant2ClinVarID: N/A

      Variant2CAID: CA2499922676

      AdditionalVariants: IVS5 (1486)C>T - this is not the current nomenclature but it is identified as a polymorphism in the article. c.1398C>T seems to be the current nomenclature for this variant.

      ParentalGenotype: All mutations were confirmed in the parental DNA

      PreviouslyPublished N/A

    1. Case#: Patient 7, 6 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. 1

      Case#: Infant #1, female

      DiseaseAssertion: MPS-I

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: 1.20 IDUA enzyme activity (Ref. 5.9–27.8 μmol/g protein/h)

      CaseUrineGAGs: DMB/Cre. Ratio - 37.86, DS - 0.27, HS - 0.10, KS - 5.69 GAG quantifications (DMB/Cre ratio) and the normal reference values based on the age groups: <6 mos: <70.68 mg /mmol cre.; 6 mos–2 yrs: <46.80 mg /mmol cre.; 2–17 yrs: <20.98 mg /mmol cre.; and >18 yrs: <12.62 mg /mmol cre. Quantitative analyses of GAG-derived disaccharides (DS, S, or KS) by tandem mass spectrometry assay. The normal cut-off values: DS < 0.80 μg/mL; HS < 0.78 μg/mL; and KS < 7.90 μg/mL.

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.343G>A (p.Asp115Asn)

      Variant1ClinVarID: N/A

      Variant1CAID: CA355961124

      Variant2: c.2T>C (p.M1?)

      Variant2ClinVarID: 639529

      Variant2CAID: CA2801095

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. 6

      Case#: Patient 6 (see Table 1), 25 years old - deceased (age at report), 9 months old (age at onset), male, height of 120 cm, weight of 20 kg, location at Djerba: Land

      DiseaseAssertion: MPS1 - intermediate

      FamilyInfo: One affected siblings (Patient 7), parents were 1st cousins (see Table 2), parents have the same grandfather but with a different wife (see Table 4), aged 40 yrs (M) and 49 yrs (F).

      CasePresentingHPOs: HP:0004322, HP:0007957, HP:0000924, HP:0001387 (Short stature, corneal clouding, moderate skeletal abnormalities, joint stiffness)

      CaseHPOFreeText: Valgus deformity

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: IDUA activity: 0.030 μKat/kg

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

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

      Variant1ClinVarID: 11910

      Variant1CAID: CA:236112

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

      Variant2ClinVarID: 11910

      Variant2CAID: CA:256112

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    2. 12

      Case#: Patient 12 (see Table 1), 5 years old (age at report), 9 months old (age at onset), female, height of 120 cm, weight of 18 kg, located at Tunis: Industrial region

      DiseaseAssertion: MPS1 - severe

      FamilyInfo: Parents were 2nd cousins (see Table 2), aged 38 yrs (M) and 46 yrs (F).

      CasePresentingHPOs: HP:0004322, HP:0001999, HP:0001537, HP:0007957, HP:0000924, HP:0010864 (Short stature, facial dysmorphia, umbilical hernia, corneal clouding, skeletal abnormalities, severe intellectual disability)

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: IDUA Activity - 0

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.1743C>G (p.Y581X)

      Variant1ClinVarID: 550883

      Variant1CAID: CA220498

      Variant2: c.1743C>G (p.Y581X)

      Variant2ClinVarID: 550883

      Variant2CAID: CA220498

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. 14 patients

      Case#: Patient 11 in Group 2 (patients who were at least 3 years of age at the time of introduction of ERT), 2 years old (age of diagnosis), 3 years old (baseline age), 6 years old (current age), male, Polish

      DiseaseAssertion: MPS1-S

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: Anthropometric features

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: Diagnosis of MPS I confirmed by the biochemical determination of α-l-iduronidase deficiency in leukocytes

      CaseUrineGAGs: Baseline urinary GAG values ranged from 450 to 1330 mg/g of creatinine. For treated patients the reductions of urinary GAG ranged from 30% to 80% with a mean reduction of 55%, but it never approached the normal range for age.

      CaseERT: Yes - for 156 weeks he received weekly intravenous infusions of 100 U/kg (0.58 mg/kg) laronidase

      CaseBMT: No

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

      Variant1ClinVarID: 11909

      Variant1CAID: CA204563

      Variant2: c.227A>G (p.Y76C)

      Variant2ClinVarID: 552686

      Variant2CAID: CA2801140

      AdditionalVariants: c.1345C>A (p.H449N); ClinVarID:350230, CAID:CA2802233

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. Chinese mucopolysaccharidosis type IH/S patient

      Case#: Chinese. 12 years old (age at report)

      DiseaseAssertion: MPS1-H/S

      FamilyInfo: N/A

      CasePresentingHPOs: Short stature, macrocephaly, coarse face, corneal clouding, skeletal deformities, hepatosplenomegaly, hearing impairment, tracheal stenosis, hypertrophic cardiomyopathy, obstructive sleep apnea, umbilical hernia, anemia, ichthyosis (HP:0004322, HP:0000256, HP:0000280, HP:0007957, HP:0000924, HP:0001433, HP:0000365, HP:0002777, HP:0001639, HP:0002870, HP:0001537, HP:0001903, HP:0008064

      CaseHPOFreeText: Normal intelligence, adenoid hyperplasia, tonsil hypertrophy

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: A very low level of IDUA activity (1.8%) was detected in the patient's fibroblast cells (data not shown).

      The effects of both mutations on IDUA activity and/or splicing were examined by transfection into COS-7 cells of the IDUA cDNA construct. When compared to that of wild-type cDNA, 87.5, 1.6, and 0.4% IDUA activity was observed with the IDUA cDNA containing the wild-type acceptor splice site (388-3c), the mutated acceptor splice site (388-3g), or L346R.

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.1037T>G (p.Leu346Arg)

      Variant1ClinVarID: 11927

      Variant1CAID: CA256128

      Variant2: c.300-3C>G; c.388-3C>G in the paper (old nomenclature)

      Variant2ClinVarID: 551563

      Variant2CAID: CA549265042

      AdditionalVariants: p.Q33H (polymorphism)

      ParentalGenotype: Maternal: c.1037T>G (p.L346R); Paternal: c.300-3C>G (c.388-3C>G in the paper, old nomenclature)

      PreviouslyPublished N/A

    1. 1

      Case#: Patient No. 1 (Table 1), White race, male, 1.97 years old (age at time of gene therapy), 75 IQ score. 2.9 years since gene therapy, 2 years since latest visit.

      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.603C>G

      Variant1ClinVarID: 1323100

      Variant1CAID: CA355961899

      Variant2: c.603C>G (p.Y603X)

      Variant2ClinVarID: 1323100

      Variant2CAID: CA355961899

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. II

      Case#: Patient II, origin of proband is Germany

      DiseaseAssertion: Hurler syndrome (H)

      FamilyInfo: No family information stated in this paper

      CasePresentingHPOs:

      CaseHPOFreeText:

      CaseNotHPOs:

      CaseNotHPOFreeText:

      CaseEnzymeAssay: 0.01mU IDUA enzyme activity in proband. Paper states that the reference range for this proband is the control sample.

      CaseUrineGAGs: Information not stated in this paper

      CaseERT: Don't know

      CaseBMT: Don't know

      Variant1: c.979G>C, p.A327P

      Variant1ClinVarID: 167190

      Variant1CAID: CA234128

      Variant2: Not identified in this study

      Variant2ClinVarID: N/A

      Variant2CAID: N/A

      AdditionalVariants: No additional variants mentioned

      ParentalGenotype: No parental information provided

      PreviouslyPublished: I do not believe this proband was previously published. The paper states that variant "c.979G>C have been found in patients previously." It does not link the variant to a specific paper but instead references a list of papers. Here are the PMIDs of those paper: 7951228, 1301196, 1301941, and 7550232

    1. 1

      Case#: One patient from Egypt

      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.964delC in paper but correct nomenclature is c.876delC (p.Asp292GlufsTer25)

      Variant1ClinVarID: 456720

      Variant1CAID: CA658657370

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

      Variant2ClinVarID: 11908

      Variant2CAID: CA220498

      AdditionalVariants: c.1360G>A (p.V454I) and c.1467C>T (p.R489=)

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    2. 4 missense mutations

      Case#: One patient from The Netherlands

      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.1466G>C (p.R489P)

      Variant1ClinVarID: 1518214

      Variant1CAID: CA355964650

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

      Variant2ClinVarID: 11908

      Variant2CAID: CA220498

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. 11/M

      Case#: 11, Male, 20 months (onset), 3 years (diagnosed), 9 years (report)

      DiseaseAssertion: Hurler Syndrome

      FamilyInfo: Not Provided

      CasePresentingHPOs: HP:0000256, HP:0001387, HP:0002240, HP:0001744, HP:0001537, HP:0000407, HP:0000280, HP:0000943, HP:0007957 (Macrocephaly, Joint Stiffness, Hepatomegaly (moderate before HSCT and none at 9y), Splenomegaly (moderate before HSCT and none at 9y), Umbilical Hernia, Sensorineural hearing loss, Coarse Facial Features, Dysostosis Multiplex, Corneal Clouding)

      CaseHPOFreeText: (Mental Development (Delayed since 2nd year; Developmental Quotient 73 before HSCT; mental regress after HSCT, Developmental Quotient 45 at 5y), Severe Acute graft versus host disease)

      CaseNotHPOs: HP:0004322 (Short stature)

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: normal IDUA activity

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: Hematopoietic Stem Cell Transplantation at 3y

      GenotypingMethod: Not Provided

      Variant1: p.Q70X

      Variant1ClinVarID: 11909

      Variant1CAID: CA204563

      Variant2: p.Y167X

      Variant2ClinVarID: N/A

      Variant2CAID: CA355961650

      AdditionalVariants: p.Q33H/Q33H, p.R105Q, p.N181, p.A314, p.T410, p.V454I, p.R489

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    2. 17/F

      Case#: 17, Female, 9 years (onset), 10 years (diagnosed), 10 years (report)

      DiseaseAssertion: Scheie Syndrome

      FamilyInfo: Patients 17 and 18 are siblings

      CasePresentingHPOs: HP:0004322, HP:0002240, HP:0001537, HP:0000280, HP:0000943, HP:0007957 (Short Stature, Hepatomegaly (moderate), Umbilical Hernia, Coarse Facial Features (mild), Dysostosis Multiplex, Corneal Clouding)

      CaseHPOFreeText: (Mental Development (Verbal IQ 92; Performance IQ 84; CIQ 86), Mild septal hypertrophy; mitral valve dysplasia)

      CaseNotHPOs: HP:0000256, HP:0001387, HP:0001744 (Macrocephaly, Joint Stiffness, Splenomegaly)

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      GenotypingMethod: Not Provided

      Variant1: p.Q380R

      Variant1ClinVarID: 550799

      Variant1CAID: CA2802202

      Variant2: p.Q380R

      Variant2ClinVarID: 550799

      Variant2CAID: CA2802202

      AdditionalVariants: p.A8/A8, p.A20/A20

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    3. 1/M

      Case#: 1, Male, 4 months (onset), 2 years (diagnosed), 2 years (report), deceased

      DiseaseAssertion: Hurler Syndrome

      FamilyInfo: Not Provided

      CasePresentingHPOs: HP:0004322, HP:0000256, HP:0001387, HP:0002240, HP:0001744, HP:0001639, HP:0001537, HP:0011947, HP:0000158, HP:0000280, HP:0000943, HP:0007957 (Short Stature, Macrocephaly, Joint Stiffness, Hepatomegaly (severe), Splenomegaly (severe), Hypertrophic Cardiomyopathy, Umbilical Hernia, Respiratory Infections, Large Tongue, Coarse Facial Features, Dysostosis Multiplex, Corneal Clouding)

      CaseHPOFreeText: Mental Development (Developmental Quotient 54-62 at 2y), Systolic Murmur (3/6),

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: N/A

      GenotypingMethod: Not Provided

      Variant1: p.W402X

      Variant1ClinVarID: 11908

      Variant1CAID: CA220498

      Variant2: p.W402X

      Variant2ClinVarID: 11908

      Variant2CAID: CA220498

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    4. 2/M

      Case#: 2, Male, 1 year (onset), 13 months (diagnosed), 5 years (report)

      DiseaseAssertion: Hurler Syndrome

      FamilyInfo: Not Provided

      CasePresentingHPOs: HP:0001387, HP:0002240, HP:0001744, HP:0001537, HP:0000023, HP:0000365, HP:0000158, HP:0000280, HP:0000943, HP:0007957 (Joint Stiffness, Hepatomegaly (moderate before HSCT, mild after HSCT), Splenomegaly (mild), Umbilical Hernia, Inguinal Hernia, Deafness, Large Tongue, Coarse Facial Features, Dysostosis Multiplex, Corneal Clouding)

      CaseHPOFreeText: Mental Development (Normal development till 1y, developmental quotient 79 at 2y), Systolic Murmur (1/6; Ejection fraction of 68% at 4 years old)

      CaseNotHPOs: HP:0004322, HP:0000256 (Short Stature, Macrocephaly)

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: N/A

      CaseBMT: Hematopoietic Stem Cell Transplantation in 2 years (chimerism)

      GenotypingMethod: Not Provided

      Variant1: p.W402X

      Variant1ClinVarID: 11908

      Variant1CAID: CA220498

      Variant2: p.W402X

      Variant2ClinVarID: 11908

      Variant2CAID: CA220498

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      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.1882C>T (p.R628X)

      Variant2ClinVarID: 550421

      Variant2CAID: CA2802462

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. MPS I_Case 04

      Case#: MPS I_Case 04, male newborn

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

      FamilyInfo: No family information provided

      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 0.54 umole/L/Hr; this is below the study's DBS enzyme activity cutoff value of 3 umol/L/h

      CaseUrineGAGs: Urine DMB GAG ratio, dermatan sulfate amount, heparan sulfate amount, and keratan sulfate amount was not calculated for this proband because their parents refused further analysis

      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 newborn)

      Variant1: c.1079T>G, p.F360C

      Variant1ClinVarID:

      Variant1CAID: CA355963276

      Variant2: c.1359_1384del, p.S453Rfs*47

      Variant2ClinVarID:

      Variant2CAID: CA3051384105

      AdditionalVariants: No additional variants 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.

    2. MPS I_Case 03

      Case#: MPS I_Case 03, female newborn

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

      FamilyInfo: MPS I_Case 03 and MPS I_Case 02 are twins

      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 0.51 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 239.3 mg/mmol creatinine. 41.04 ug/ml dermatan sulfate in urine (<0.41 ug/ml is the reference cutoff for dermatan sulfate in this study). 2.93 ug/ml ug/ml heparan sulfate in urine (<0.8 ug/ml is the reference cutoff for heparan sulfate in this study). 0.00 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 newborn)

      Variant1: c.1037T>G, p.L346R

      Variant1ClinVarID: 11927

      Variant1CAID: CA256128

      Variant2: c.1091C>T, p.T364M

      Variant2ClinVarID: 11925

      Variant2CAID: CA256126

      AdditionalVariants: No additional variants 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. 3F51.54.7

      Case#:Patient Sample unique ID 2

      DiseaseAssertion:MPS type I-Hurler children

      FamilyInfo:None

      CasePresentingHPOs:None

      CaseHPOFreeText:None

      CaseNotHPOs:Obstructive sleep apnea, HP:0002870

      CaseNotHPOFreeText:None

      CaseEnzymeAssay:None

      CaseUrineGAGs: Tested but amounts not reported

      CaseERT:No

      CaseBMT:Hematopoietic stem cell transplantation

      Variant1:c.606c>A

      Variant1ClinVarID:979011

      Variant1CAID:CA370987409

      Variant2:c.979G>C

      Variant2ClinVarID:167190

      Variant2CAID:CA234128

      AdditionalVariants:None

      ParentalGenotype:None provided

      PreviouslyPublished:N/A

    2. 5F81.53.5

      Case#:Patient Sample unique ID 2

      DiseaseAssertion:MPS type I-Hurler children

      FamilyInfo:None

      CasePresentingHPOs:None

      CaseHPOFreeText:None

      CaseNotHPOs:Obstructive sleep apnea, HP:0002870

      CaseNotHPOFreeText:None

      CaseEnzymeAssay:None

      CaseUrineGAGs: Tested but amounts not reported

      CaseERT:No

      CaseBMT:Hematopoietic stem cell transplantation

      Variant1:c.1205G>A

      Variant1ClinVarID:11908

      Variant1CAID:CA220498

      Variant2:c.1205G>A

      Variant2ClinVarID:11908

      Variant2CAID:CA220498

      AdditionalVariants:None

      ParentalGenotype:None provided

      PreviouslyPublished:N/A

    1. 13

      Case#: Patient 13, born in 2010 (paper published in 2017), 16 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: 55 ng/mol (36 weight matched enzyme reference assay)

      CaseUrineGAGs: 0.28 DS/CS

      CaseERT: N/A

      CaseBMT: Yes, MUD (GOS)

      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. 3 a

      Case#: Patient 3: Enrolled in study at 6.5 years, female, onset at 2 years, diagnosed at 2.6 years, ERT started 4.6 years DiseaseAssertion:MPS1 H-S FamilyInfo:No consanguinity, Sister similarly affected CasePresentingHPOs:Corneal opacity (HP:0007957), Joint stiffness (HP:0001387), Macrocephaly (HP:0000256), CaseHPOFreeText: CaseNotHPOs: Hepatosplenomegaly (HP:0001433) CaseNotHPOFreeText: CaseEnzymeAssay: CaseUrineGAGs: 0.74(min)-4.46(max) mg GAG/mmol creatinine while on ERT CaseERT: Laronidase dose-optimization trial : standard regimen – 0.58 mg/kg/week; biweekly regimen – 1.2 mg/kg every two weeks CaseBMT:Nil Variant1:P533R Variant1ClinVarID:11910 Variant1CAID:CA256112 Variant2:P533R Variant2ClinVarID:11910 Variant2CAID:CA256112 AdditionalVariants:Nil ParentalGenotype:NA PreviouslyPublishedNA

    1. R619X

      Case#: Family 15, Guernsey

      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.208C>T (p.Q70X)

      Variant1ClinVarID: 11909

      Variant1CAID: CA204563

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

      Variant2ClinVarID: 280976

      Variant2CAID: CA2802455

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    2. 5 Hurler/Scheie

      Case#: Family 22, Pakistan

      DiseaseAssertion: MPS1-H/S

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      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.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. Case#: 11 years old (age of onset). The patient became pregnant at 30 years of age and had one miscarriage at 17 weeks. 7 months later, she went on to deliver a healthy male at 37 weeks. The boy, now 2.5 years old, has continued to develop normally.

      DiseaseAssertion: MPS1-S

      FamilyInfo: N/A

      CasePresentingHPOs: Carpal tunnel syndrome, joint stiffness, limitation of joint mobility (HP:0012185, HP:0001387, HP:0001376)

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: N/A

      CaseUrineGAGs: N/A

      CaseERT: Yes - initiation of ERT with laronidase (100 U/kg/week) when she was 30-years-old

      CaseBMT: N/A

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

      Variant1ClinVarID: 167190

      Variant1CAID: CA234128

      Variant2:

      Variant2ClinVarID:

      Variant2CAID:

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. Case#: Pt 6, age is 18 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.W402X

      Variant1ClinVarID:

      Variant1CAID: PA3051368272

      Variant2: c.1163delC

      Variant2ClinVarID: 828094

      Variant2CAID: CA915942984

      AdditionalVariants: No additional variants mentioned

      ParentalGenotype: No parental information provided

      PreviouslyPublished: No mention of being previously published

    2. Case#: Pt 2, 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.Q70X

      Variant1ClinVarID:

      Variant1CAID: PA3044620172

      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. 2 f 2010 1.5 2.0 3.5 94 c.606c > A p.Y202X c.979G > C p.A327P

      Case#: Patient 2, female, German, 1.5yo at HSCT, 3.5yo at report

      DiseaseAssertion: MPS I, Hurler

      FamilyInfo: n/a

      CasePresentingHPOs:

      CaseHPOFreeText: diagnosis of MPS I confirmed by enzyme activity determination and/or genetic testing, Hurler phenotype, hematopoietic stem cell transplantation (HSCT) and a minimum of two orthopedic evaluations. enzyme replacement therapy (ERT) prior to HSCT. severely limited shoulder abduction (deficit ≥90°), mild flexion joint contractures of elbows, hips and knees (5–15°). normal odontoid process and increased soft tissue mass surrounding the odontoid. Flattened and beaked vertebrae and paddle shaped ribs.

      CaseNotHPOs:

      CaseNotHPOFreeText: thoracolumbar kyphosis was absent at an average age of 1.6 years

      GenotypingMethod: n/a

      PreviouslyPublished: n/a

      Variant: c.606C > A p.Y202X; c.979G > C p.A327P

      CAID: CA355961907

      SupplementalData: n/a

    1. 5/F

      Case#: Patient 5, female, 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: 0.7 nmol/mg/h (reference range 135 ± 57 nmol/mg/h)

      CaseUrineGAGs: 27.57 mg GAG/mmol/creatinine (reference range 6.17 ± 3.79 mg GAG/mmol creatinine)

      CaseERT: No

      CaseBMT: No

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

      Variant1ClinVarID: 11909

      Variant1CAID: CA204563

      Variant2: c.1139A>G (p.Q380R)

      Variant2ClinVarID: 550779

      Variant2CAID: CA2802202

      AdditionalVariants: N/A

      ParentalGenotype: N/A

      PreviouslyPublished N/A

    1. Patient W3 has heterozygous mutations; the maternal allele has M1I (G to A transition in the initiation codon ATG) and the paternal allele has Y343X (C to G transversion in exon 8 leading to in frame deletion of codons 325-343 from the mRNA owing to false splicing)

      This paper is cited on the ClinVar page for this variant, but this is actually the c.1029C>G (p.Tyr343Ter) variant which causes the same amino acid change

    1. The patient is a 13-year-old female,

      Case#:13-year-old female

      DiseaseAssertion: MPS1

      FamilyInfo: Healthy, unrelated parents with no family history of MPS ..

      ParentalTesting: NR

      CasePresentingHPOs:HP:0004322, HP:0002970, HP:0000316, HP:0000286, HP:0007481, HP:0002967, HP:0034337, HP:0001634

      CaseHPOFreeText: Inability to extend fingers in both hands, restricted extension of both upper limbs, hyperopia, small jaw, widened intercostal spaces, limited abduction of both upper limbs, Breasts: Tanner stage I. Pubic hair: Tanner stage I, ’’paddle-shaped” sternum, bone age consistently with approximately 8 years,

      CaseNotHPOs: HP:0011369,

      CaseNotHPOFreeText: Physical examination of the heart, lungs, and abdomen revealed no significant abnormalities. Neurological examinations showed no positive findings.Cortisol, total type I collagen N-terminal propeptide, and adrenocorticotropic hormone (ACTH) levels were all within normal ranges, peripheral blood chromosome karyotype analysis 46, XX.Transabdominal ultrasound of the uterus and bilateral adnexa showed no uterine structure visible. No significant abnormalities in thoracic vertebral bodies.

      CasePreviousTesting: NR

      Genotyping Method: Whole-exome sequencing and Sanger sequencing

      FunctionalAnalysis: Reduced α-L-iduronidase activity - 0.3 nmol/(g·min).

      CaseUrineGAGs: NR

      CaseERT: No

      CaseBMT: No

      Variant 1: NM_000203.5(IDUA):c.612_615dup (p.Ser206fs)

      Variant 1 ClinVar : 226413

      Variant 1 CAID 1: CA10576338

      Variant 1 gnomAD : NR

    1. two boys

      Case#: Boy 1, male, 10 years old, born at full-term with a birth weight of 3,400 grams.

      DiseaseAssertion: MPS-I H/S

      FamilyInfo: Boy 1 was born to a Chinese family of five members, with a total of 3 boys. Genetic testing was conducted on all 5 family members. The first and third child (boy 1 and boy 3) have MPS I. The second son had a normal phenotype and genotype.

      CasePresentingHPOs: Claw hands, limitation of joint mobility, corneal clouding (HP:0034337, HP:0001376, HP:0007957)

      CaseHPOFreeText: Swollen knee, lesions (noted at 3 years old)

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CaseEnzymeAssay: 3.84 nmol/h/mg (reference range >21)

      CaseUrineGAGs: Positive for urinary polysaccharide toluidine blue staining test

      CaseERT: N/A

      CaseBMT: N/A

      Variant1: c.265C>T (p.R89W)

      Variant1ClinVarID: 580286

      Variant1CAID: CA2801156

      Variant2: c.1633G>T (p.E545X)

      Variant2ClinVarID: N/A

      Variant2CAID: CA355965099

      AdditionalVariants: N/A

      ParentalGenotype: Mother carries c.265C>T and father carries c.1633G>T.

      PreviouslyPublished N/A

    1. P2

      Case#: P2, male, 1.8 years (age at HCT - hematopoietic cell transplantation), 14 iPS colonies per 100,000 cells (KC), 4 iPS colonies per 100,000 cells (MSC).

      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: Yes - Donor cells were received from KC, keratinocytes, and MSC, mesenchymal stromal cells.

      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. Pt4

      Case#: Pt4, Male, 9 months (diagnosis), 9 months (onset)

      DiseaseAssertion: Hurler Syndrome

      FamilyInfo: N/A Pedigree (Figure 4Pt4)

      CasePresentingHPOs: HP:0000280, HP:0000365, HP:0100814, (Coarse face, Hearing Loss, Dermal melanocytosis)

      CaseHPOFreeText: Spinal Deformation, Inguinal or Umbilical hernia

      CaseNotHPOs: HP:0007957, HP:0001387, HP:0001654, HP:0001433, (Cornea clouding, Joint stiffness, Valvular heart disease, Hepatosplenomegaly)

      CaseNotHPOFreeText: Long bone deformation

      CaseEnzymeAssay: α-L-iduronidase 0.01 (leukocytes, normal 15.9–41.8 nmol/mg prot/h)

      CaseUrineGAGs: Urine glycosaminoglycans 1106.4 (mg/g creatinine) {10.7-112}

      CaseERT: N/A

      CaseBMT: N/A

      GenotypingMethod: Not Provided.

      Variant1: c.1862G>C

      Variant1ClinVarID: 1038439

      Variant1CAID: CA355965939

      Variant2: c.1862G>C

      Variant2ClinVarID: 1038439

      Variant2CAID: CA355965939

      AdditionalVariants: N/A

      ParentalGenotype: Both parents are heterozygous for c.1862G>C variant (figure 4 Pt 4)

      PreviouslyPublished: N/A

    1. 50 12 M 19 c.2443-1G.C Hmz 2 1 6 - -

      Case: 50, M, 12 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, 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

    1. Case: P57, Chinese, male, 28yo

      DiseaseAssertion: VWD2B

      FamilyInfo: NA

      ParentalGenotype(s): NA

      CasePresentingHPOs: HP:0012147

      (Reduced quantity of VWF)

      CaseHPOFreeText: type AB blood, bleeding score = 5; VWF:Ag (%) = 33.4, VWF:RCo (%) = 3.2, FVIII:C (%) = 49.2, VWF:CB (%) = 4.8, VWFpp (%) = 67.3, VWF:RCo/VWF:Ag = 0.1, VWF:CB/VWF:Ag = 0.1, VWFpp/VWF:Ag = 2.0, FVIII:C/VWF:Ag = 1.5, RIPA (0.5 mg/ml, %) = 18.2, PLT(×109/l) = 146

      CaseNOTHPOs:

      CaseNOTHPOFreeText:

      CasePreviousTesting: NA

      GenotypingMethod: NGS

      PreviouslyPublished: NA

      Gene: VWF

      Variant 1: c.2089G>C (p.Glu697Gln)

      HGVS: NM_000552.5:c.2089G>C (p.Glu697Gln)

      ClinVarID: NA

      CAID: CA383494704; http://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/by_caid?caid=CA383494704

      gnomAD: absent

      Variant 2: c.3922C>T (p.Arg1308Cys)

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

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

      CAID: NA

      gnomAD: absent

      Variant 3: c.8113G>A (p.Gly2705Arg)

      HGVS: NM_000552.4(VWF):c.8113G>A (p.Gly2705Arg)

      ClinVarID: 256702; https://www.ncbi.nlm.nih.gov/clinvar/variation/256702/

      CAID: NA

      gnomAD: MAF = 0.1254 (3839/30614 alleles; 279 homozygotes)

    1. 4 C

      Case: Patient 4, Family C (Table 1.), F/38, Afro-Caribbean

      DiseaseAssertion: VWD1

      FamilyInfo: NA

      ParentalGenotype(s): NA

      CasePresentingHPOs:

      CaseHPOFreeRext: BAT = 16, FVIII:C (IU/dL) = NA, VWF:Ag (IU/dL) = 40, VWF:Act (IU/dL) = 36

      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.2365A > G p.(Thr789Ala)

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

      ClinVarID: 256659

      CAID: CA6403090

      gnomAD: MAF of 0.5793 (43409/74928 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/12-6044368-T-C?dataset=gnomad_r4

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

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

      ClinVarID: 256660

      CAID: CA6403087

      gnomAD: MAF of 0.5788 (43385/74952 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/12-6044348-A-G?dataset=gnomad_r4

      Variant: c.4019T > C p.(Leu1340Arg)

      the paper incorrectly lists the amino acid change as Leu1340Arg but it should be Leu1340Pro

      HGVS: NM_000552.5:c.4019T>C

      ClinVarID: 3061402

      CAID: CA383505745

      gnomAD:

      Variant: c.4457C > T p.(Ser1486Leu)

      HGVS: NM_000552.5:c.4457C>T (p.Ser1486Leu)

      ClinVarID: 560630

      CAID: CA6402527

      gnomAD: MAF of 0.009120 (684/74998 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/12-6018961-G-A?dataset=gnomad_r4

      Variant: c.6187C > T p.(Pro2063Ser)

      HGVS: NM_000552.5:c.6187C>T (p.Pro2063Ser)

      ClinVarID: 100436

      CAID: CA202650

      gnomAD: MAF of 0.04780 (4353/91066 alleles) in Africa/African American population https://gnomad.broadinstitute.org/variant/12-5994484-G-A?dataset=gnomad_r4

      Variant: c.7059G > C p.(Glu2353Ser)

      paper incorrectly lists amino acid change as Glu2353Ser but it should be Glu2353Asp

      HGVS: NM_000552.5:c.7059G>C

      ClinVarID: 993253

      CAID: CA6401794

      gnomAD: MAF of 0.006101 (458/75068 alleles) in African/African American population https://gnomad.broadinstitute.org/variant/chr12-5983172-C-G?dataset=gnomad_r4

    2. 1 A

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

      DiseaseAssertion: VWD2B

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

      ParentalGenotype(s): NA

      CasePresentingHPOs:

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

      CaseNOTHPOs:

      CaseNOTHPOFreeText:

      CasePreviousTesting:

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

      PreviouslyPublished: NA

      Gene: VWF

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

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

      ClinVarID: 290

      CAID: CA114127

      gnomAD:

    3. 26 N

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

      DiseaseAssertion: VWD2A (IIE)

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

      ParentalGenotype(s): NA

      CasePresentingHPOs:

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

      CaseNOTHPOs:

      CaseNOTHPOFreeText: Blood group B+

      CasePreviousTesting:

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

      PreviouslyPublished: NA

      Gene: VWF

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

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

      ClinVarID:

      CAID: CA6403368

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

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

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

      ClinVarID: 422844

      CAID: CA6403245

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

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

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

      ClinVarID: 100206

      CAID: CA201316

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

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

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

      ClinVarID: 100224

      CAID: CA228345

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

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

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

      ClinVarID: 309

      CAID: CA228410

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

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

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

      ClinVarID: 256679

      CAID: CA6402534

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

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

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

      ClinVarID: 100443

      CAID: CA228748

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

    1. Case#: 37006, Age 45, Female, Blood Type B+ (Table S3)

      Disease Assertion: VWD 1

      FamilyInfo: The patient is the only member of Family#3706.

      Parental Genotype: Not listed

      CasePresentingHPOs: N/A

      CaseHPOFreeText: VWF:Ag:7.6, VWF:RCo:5, FVIII:C: 8.9, VWF:CB: 6.9

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: Bleeding Score 5

      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.3426T>C (p.Cys1142=), NM_000552.4:c.3614G>A (p.Arg1205His), NM_000552.4:c.7771-49G>A , NM_000552.4:c.3485_3486delinsTG (pPro1162Leu)

      ClinVar: 256668 , 308, 619934 ClinVar1 ClinVar2 ClinVar3

      CAID: CA6402757, CA114160, CA1139532197, and CA658683073 CAID1 CAID2 CAID3 CAID4

      gnomAD: MAF of 0.2228 (2240/ 10052 alleles) in the African population (CA6402757). gnomAD