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    1. P06FGerman52uk*T72PReduced2.39Pathogenic––uk47.37Severely affectedAlive

      Case#: P06. Female, German, 52 years old at the time of clinical diagnosis, Alive at the time of publication

      DiseaseAssertion: classified as "Severely affected" based on a CHAI score of 47.37%

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs:N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: The percentage of transendocytosis using either CD80-GFP or CD80-mScarlet CHO cells was determined in eight LRBA-deficient patients. No difference in the percentage of transendocytosis was observed between CTLA4-variant carriers (GFP median=5.4%; mScarlet median= 49.8%) and LRBA-deficient patients (GFP median=9.9%; mScarlet median, 48.6%). However, significantly lower percentages of transendocytosis were observed in LRBA-deficient patients compared to healthy donors (HD) when using CD80-mScarlet CHO cells (median, 48.6% vs. 65.5% in HD) (Fig. ​(Fig.4e),4e). This difference was not observed with CD80-GFP CHO cells (patients median of 9.9% in patients vs. 13.9% in HD). In conclusion, the CTLA4 transendocytosis method using CD80-mScarlet CHO cells enables the functional verification of LRBA deficiency, but it cannot differentiate between LRBA deficiency and CTLA4 insufficiency.

      GenotypingMethod: NGS and Sanger sequencing

      PreviouslyPublished: N/A

      Variant: NM_005214.5(CTLA4):c.214A>C (p.Thr72Pro)

      ClinVar ID: 546886

      gnomAD: not found

      SupplementalData: Yes, all data regarding the patient was found in Table1.

    2. P04Mukuk71.4A54TReduced2.04Pathogenic49.8Pathogenic[9]NANADead

      Case#: P04, male, genetic diagnosis at the age of 71.4, ethnicity: N/A, Dead at the time of article's publication

      DiseaseAssertion: N/A

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs:N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: The percentage of transendocytosis using either CD80-GFP or CD80-mScarlet CHO cells was determined in eight LRBA-deficient patients. No difference in the percentage of transendocytosis was observed between CTLA4-variant carriers (GFP median=5.4%; mScarlet median= 49.8%) and LRBA-deficient patients (GFP median=9.9%; mScarlet median, 48.6%). However, significantly lower percentages of transendocytosis were observed in LRBA-deficient patients compared to healthy donors (HD) when using CD80-mScarlet CHO cells (median, 48.6% vs. 65.5% in HD) (Fig. ​(Fig.4e),4e). This difference was not observed with CD80-GFP CHO cells (patients median of 9.9% in patients vs. 13.9% in HD). In conclusion, the CTLA4 transendocytosis method using CD80-mScarlet CHO cells enables the functional verification of LRBA deficiency, but it cannot differentiate between LRBA deficiency and CTLA4 insufficiency.

      GenotypingMethod: NGS and Sanger sequencing

      PreviouslyPublished: N/A

      Variant: NM_005214.5(CTLA4):c.160G>A (p.Ala54Thr)

      ClinVar ID: 430905

      gnomAD: not found

      SupplementalData: Yes, all data regarding the patient was found in Table1.

    3. P03Mukukuk*G52DReduced––17.2PathogenicukNANAAlive

      Case#: P03, Male, Age: N/A, ethnicity: N/A, Alive at the time of article's publication

      DiseaseAssertion: N/A

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs:N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: The percentage of transendocytosis using either CD80-GFP or CD80-mScarlet CHO cells was determined in eight LRBA-deficient patients. No difference in the percentage of transendocytosis was observed between CTLA4-variant carriers (GFP median=5.4%; mScarlet median= 49.8%) and LRBA-deficient patients (GFP median=9.9%; mScarlet median, 48.6%). However, significantly lower percentages of transendocytosis were observed in LRBA-deficient patients compared to healthy donors (HD) when using CD80-mScarlet CHO cells (median, 48.6% vs. 65.5% in HD) (Fig. ​(Fig.4e),4e). This difference was not observed with CD80-GFP CHO cells (patients median of 9.9% in patients vs. 13.9% in HD). In conclusion, the CTLA4 transendocytosis method using CD80-mScarlet CHO cells enables the functional verification of LRBA deficiency, but it cannot differentiate between LRBA deficiency and CTLA4 insufficiency.

      GenotypingMethod: NGS and Sanger sequencing

      PreviouslyPublished: N/A

      Variant: NM_005214.5(CTLA4):c.155G>A (p.Gly52Asp)

      ClinVar ID: 871301

      gnomAD: not found in any gnomAD version.

      SupplementalData: Yes, all data regarding the patient was found in Table1.

    4. P22FGermanukuk*L163Sfs*24Reduced––37.2Pathogenicuk42.86Severely affectedAlive

      Case#: P22, Female, German, age: n/a , alive at the time of publication

      DiseaseAssertion: Severely affected based on a CHAI score of 42.86%

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs:N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: The percentage of transendocytosis using either CD80-GFP or CD80-mScarlet CHO cells was determined in eight LRBA-deficient patients. No difference in the percentage of transendocytosis was observed between CTLA4-variant carriers (GFP median=5.4%; mScarlet median= 49.8%) and LRBA-deficient patients (GFP median=9.9%; mScarlet median, 48.6%). However, significantly lower percentages of transendocytosis were observed in LRBA-deficient patients compared to healthy donors (HD) when using CD80-mScarlet CHO cells (median, 48.6% vs. 65.5% in HD) (Fig. ​(Fig.4e),4e). This difference was not observed with CD80-GFP CHO cells (patients median of 9.9% in patients vs. 13.9% in HD). In conclusion, the CTLA4 transendocytosis method using CD80-mScarlet CHO cells enables the functional verification of LRBA deficiency, but it cannot differentiate between LRBA deficiency and CTLA4 insufficiency.

      GenotypingMethod: NGS and Sanger sequencing

      PreviouslyPublished: N/A

      Variant: ENSP00000497102.1:p.Leu163Ser

      ClinVar ID:

      CAID: PA2850594025

      gnomAD: Not found

      SupplementalData: Yes, all data regarding the patient was found in Table1.

    5. P21FAmericanukuk*P156LReduced––36.7PathogenicukNANAAlive

      Case#: P21, female, American, age: n/a, alive at the time of publication

      DiseaseAssertion: n/a

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs:N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: The percentage of transendocytosis using either CD80-GFP or CD80-mScarlet CHO cells was determined in eight LRBA-deficient patients. No difference in the percentage of transendocytosis was observed between CTLA4-variant carriers (GFP median=5.4%; mScarlet median= 49.8%) and LRBA-deficient patients (GFP median=9.9%; mScarlet median, 48.6%). However, significantly lower percentages of transendocytosis were observed in LRBA-deficient patients compared to healthy donors (HD) when using CD80-mScarlet CHO cells (median, 48.6% vs. 65.5% in HD) (Fig. ​(Fig.4e),4e). This difference was not observed with CD80-GFP CHO cells (patients median of 9.9% in patients vs. 13.9% in HD). In conclusion, the CTLA4 transendocytosis method using CD80-mScarlet CHO cells enables the functional verification of LRBA deficiency, but it cannot differentiate between LRBA deficiency and CTLA4 insufficiency.

      GenotypingMethod: NGS and Sanger sequencing

      PreviouslyPublished: N/A

      Variant: NM_005214.5(CTLA4):c.467C>T (p.Pro156Leu)

      ClinVar ID: 1035066

      gnomAD: 0.00002292 https://gnomad.broadinstitute.org/variant/2-203871387-C-T?dataset=gnomad_r4

      SupplementalData: Yes, all data regarding the patient was found in Table1.

    6. P20MGerman2222.7T147Rfs*8Reduced––30.7Pathogenic[12]42.11Severely affectedDead

      Case#: P20, male, German, 22 years old at the time of clinical diagnosis, 22.7 years old at the time of genetic diagnosis, dead at the time of publication

      DiseaseAssertion: Severely affected based on a CHAI score of 42.11%

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs:N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: The percentage of transendocytosis using either CD80-GFP or CD80-mScarlet CHO cells was determined in eight LRBA-deficient patients. No difference in the percentage of transendocytosis was observed between CTLA4-variant carriers (GFP median=5.4%; mScarlet median= 49.8%) and LRBA-deficient patients (GFP median=9.9%; mScarlet median, 48.6%). However, significantly lower percentages of transendocytosis were observed in LRBA-deficient patients compared to healthy donors (HD) when using CD80-mScarlet CHO cells (median, 48.6% vs. 65.5% in HD) (Fig. ​(Fig.4e),4e). This difference was not observed with CD80-GFP CHO cells (patients median of 9.9% in patients vs. 13.9% in HD). In conclusion, the CTLA4 transendocytosis method using CD80-mScarlet CHO cells enables the functional verification of LRBA deficiency, but it cannot differentiate between LRBA deficiency and CTLA4 insufficiency.

      GenotypingMethod: NGS and Sanger sequencing

      PreviouslyPublished: N/A

      Variant: NP_001032720.1:p.Thr147Arg

      ClinVar ID:

      CAID: PA2850594024

      gnomAD: Not found

      SupplementalData: Yes, all data regarding the patient was found in Table1.

    7. P19FItalianukukN145SNormal16.9Non-pathogenic––[9]NANAAlive

      Case#: P19, Female, Italian, age: n/a, alive at the time of diagnosis

      DiseaseAssertion: n/a

      FamilyInfo: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: N/A

      CaseNotHPOs:N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: The percentage of transendocytosis using either CD80-GFP or CD80-mScarlet CHO cells was determined in eight LRBA-deficient patients. No difference in the percentage of transendocytosis was observed between CTLA4-variant carriers (GFP median=5.4%; mScarlet median= 49.8%) and LRBA-deficient patients (GFP median=9.9%; mScarlet median, 48.6%). However, significantly lower percentages of transendocytosis were observed in LRBA-deficient patients compared to healthy donors (HD) when using CD80-mScarlet CHO cells (median, 48.6% vs. 65.5% in HD) (Fig. ​(Fig.4e),4e). This difference was not observed with CD80-GFP CHO cells (patients median of 9.9% in patients vs. 13.9% in HD). In conclusion, the CTLA4 transendocytosis method using CD80-mScarlet CHO cells enables the functional verification of LRBA deficiency, but it cannot differentiate between LRBA deficiency and CTLA4 insufficiency.

      GenotypingMethod: NGS and Sanger sequencing

      PreviouslyPublished: N/A

      Variant: ENST00000295854.10:c.434A>G

      ClinVar ID:

      CAID: CA350138791

      gnomAD: 6.197e-7 https://gnomad.broadinstitute.org/variant/2-203870910-A-G?dataset=gnomad_r4

      SupplementalData: Yes, all data regarding the patient was found in Table1.

    1. female patient

      Case#: case_Kiyota_2018, female,1 yo (onset), Japanese ancestry reported

      DiseaseAssertion: APDS + 22q13 deletion syndrome

      FamilyInfo: de novo

      CasePresentingHPOs: (HP:0001973, HP:0000969, HP:0011134, HP:0000123, HP:0000093, HP:0003073, HP:0004431, HP:0003493, HP:0020151, HP:0033604, HP:0001263, HP:0001290, HP:0000729, HP:0002463, HP:0001249, HP:0007021, HP:0012433

      ITP systemic edema mild fever lupus nephritis proteinuria hypoalbuminemia decreased complement levels antinuclear antibody double strand DNA antibody wire-loop lesions in glomeruli delayed psychmotor development hypotonia autistic features language delay intellectual disability reduced sensitivity to pain poor social functioning

      CaseHPOFreeText: positive staining for IgG, IgA, IgM, C3 and C1q and electron-dense deposits observed through renal biopsy, along with wire-loop lesions

      CaseNotHPOs: (HP:0030882, 0010783, HP:0030880) coronary aneurysm butterfly erythema Raynaud's phenomenon

      CaseNotHPOFreeText: dysmorphic features

      CasePreviousTesting: G-band karyotyping + whole genome SNP microarray revealed 22q13 deletion syndrome

      GenotypingMethod: WES

      PreviouslyPublished:

      Variant: NM_005026.3:c.1534C > T; p.(Arg512Trp)

      ClinVarID: 1347382

      CAID: CA577258

      gnomAD: v2.1.1 Grpmax 0.00007392 (4/18252 alleles) East Asian population

      SupplementalData:

    1. c.518G>A

      Case#:1/M. 1.5 y.o. (onset) and 14 y.o. (at assessment), male

      DiseaseAssertion: Patient had arthritis, neutropenia and thrombocytopenia, lymphadenopathy, and abdominal pain. The diagnosis of CTLA4 haploinsufficiency was made retrospectively in 7 patients who underwent HSCT for life-threatening, treatment-resistant immune dysregulation and in 1 patient prospectively (unclear which patients were identified retrospectively and prospectively).

      FamilyInfo: Father was noted to have Immune dysregulation, Cytopenias and Lymphoma. The patient's father was also noted to have a complex autoimmune disease and died after autologous HSCT for non-Hodgkin lymphoma.

      CasePresentingHPOs: HP:0001369 (Arthritis), HP:0001875 (Neutropenia), HP:0001873 (Thrombocytopenia), HP:0002716 (Lymphadenopathy), HP:0002027 (Abdominal pain), HP:0002720 (Decreased circulating IgA level).

      CaseHPOFreeText: Autoimmune pancytopenia, Recurrent abdominal pain, Arthritis

      This patient was offered HSCT because of ongoing autoimmunity and risk of lymphoma because his father had complex autoimmune disease and died after autologous HSCT for non-Hodgkin lymphoma.

      All 8 patients received steroids and a calcineurin inhibitor before transplant

      Five patients (including this patient) had peripheral blood HSC grafts and received cyclosporine and mycophenolate mofetil (MMF) for graft versus host disease (GvHD) prophylaxis.

      Patient had cytomegalovirus reactivation early post-HSCT and autoimmune hemolytic anemia 6 months post-HSCT, which responded to steroids; he is now off all medication.

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: Patient has low levels of IgA but IgG and IgM levels appear to be within normal range. See Table I.

      CasePreviousTesting: Not found

      GenotypingMethod: Not found

      PreviouslyPublished: Yes, Schwab et al. PMID: 29729943

      Variant: c.518G>A, p.G173E

      ClinVarID: N/A

      CAID: CA350138990

      gnomAD: Not found

      SupplementalData: More information regarding Lymphocyte subsets and Immunoglobulins in Table I. Table II contains variant information and Table III contains further details about HSCT and a breakdown of each patient's transplant procedure.

      Note: No mention of whether or not the patient was tested using transendocytosis.

    1. one patient with cytotoxic T-lymphocyte-associated protein 4 (CTLA-4) haploinsufficiency

      Case#: Buchbinder_2019_Patient 1, female, 11 y.o. (onset) 21 y.o. (report), Caucasian

      DiseaseAssertion: cytotoxic T-lymphocyte-associated protein 4 (CTLA-4) haploinsufficiency

      FamilyInfo: "maternal history of vitiligo, hypothyroidism, a maternal grandmother with hypothyroidism, and a maternal great grandmother with multiple sclerosis." mutation was present in the mother, maternal grandmother, and absent in the father.

      CasePresentingHPOs: HP:0002113, HP:0001085, HP:0032070, HP:0000988, HP:0002027, HP:0002017, HP:0002014, HP:0001433, HP:0001973, HP:0004313, HP:0001888, HP:0001875, HP:0033608, HP:0002716, HP:0033583, HP:0002729, HP:0001945, HP:0032154, HP:0002829, HP:0032366, HP:0032296, HP:0005479, HP:0100633, HP:0004295, HP:0100279, HP:0032203, HP:0002633, HP:0030374, HP:0045080, HP:0005415, HP:0001882, HP:0002315, HP:0000505, HP:0001250, HP:0000225, HP:0001873

      (nodular pulmonary infiltrates, papilledema, leptomeningeal enhancement, recurrent rashes, abdominal pain, vomiting, diarrhea, hepatosplenomegaly, immune cytopenias, hypogammaglobulinemia, lymphopenia, neutropenia, pulmonary nodules, adenopathy, lymphocytic pleocytosis, follicular bronchiolitis, follicular lymphoid hyperplasia, fevers, aphthous ulcerations, arthralgias, presence of direct antiglobulin, elevated IgG level, decreased IgE level, chronic esophagus inflammation, gastric mucosa inflammation, colon inflammation, intramucosal lymphoid nodules in colon, vasculitis, decreased memory B cells, decreased CD3+T, decreased CD8+T, decreased WBC, headache, decreased vision, seizures, gum bleeding, thrombocytopenia)

      CaseHPOFreeText: autoantibodies were absent except for a positive direct antiglobulin test. Improvement with corticosteroids, faint oligoclonal bands documented yet absent on subsequent evaluation. brain lesions, elevated CD19+B, decreased NK,

      CaseNotHPOs: abnormal bone marrow, abnormal bronchoscopy, abnormal IgA, abnormal IgM, positive anti neuronal antibody test

      CaseNotHPOFreeText: n/a

      CasePreviousTesting: none

      GenotypingMethod: Sanger sequencing of CTLA4

      PreviouslyPublished: not reported

      Variant: heterozygous for NM_005214.5:c.151C>T

      ClinVarID: 161109

      CAID: CA173992

      gnomAD: not found

      SupplementalData: none

    2. Clinical Challenges: Identification of Patients with Novel Primary Immunodeficiency Syndromes

      PMID: 29200144

      Gene: CTLA4, PIK3CD

      HGNC: 2505,

      Disease: CTLA-4 haploinsufficiency, APDS/PASLI

      MONDO: MONDO:0014493, MONDO:0018338

      InheritancePattern: AD (haploinsufficiency), AD

      Prevalence: <1 in 1,000,000. <1 in 1,000,000

      Penetrance: The penetrance of the phenotype among carriers of pathogenic variants is incomplete, incomplete

      Note: The authors say PI3KCD throughout the article, but I believe they meant PIK3CD.

    1. 2.1 Case report

      Case#: 2-month-old boy

      DiseaseAssertion:

      FamilyInfo: One healhy brother, noncontributory

      CasePresentingHPOs: HP:0025104(Capillary malformation) HP:0004691(2-3 toe syndactyly) HP:0001520(Large for gestational age) HP:0001548(Overgrowth) HP:0033725(Thin corpus callosum) HP:0004315(Decreased circulating IgG level) HP:0002720(Decreased circulating IgA level)

      CaseHPOFreeText: At 12 months of age two ear infections occuring four weeks apart and a bilateral eye infection.

      CaseNotHPOs: HP:0012759(Neurodevelopmental abnormality) HP:0002850(Decreased circulating total IgM)

      CaseNotHPOFreeText: Segmental overgrowth was not observed. Normal newborn bloodspot and hearing screen. Ophthalmology examination is normal. No no evidence for a capillary pial vascular malformation

      CasePreviousTesting: Whole-exome sequencing and mtDNA testing

      GenotypingMethod: Exome sequencing and mtDNA testing was performed on the patient’s blood sample and cultured fibroblast from a 3 mm punch biopsy from right lower paraspinal region.

      PreviouslyPublished: No

      Variant: NM_181523.2:c.1746-2A>G p.? 9% of the proband's blood cells (74 sequencing reads) and in 25% of the cultured fibroblasts (84 sequencing reads).

      ClinVar: https://www.ncbi.nlm.nih.gov/clinvar/variation/1298995/ germline

      CAID: CA359883172

      gnomAD: Not present in gnomAD

    1. 125F668823802361389153289>300018,40050231Eosinophils 17%, fungal scrapes—positive

      Case#: 12, M, 5 y.o., Ethnicity: Indian.

      CasePresentingHPOs: HP:0001945 (Fever), HP:0001824 (Weight loss), HP:0002716 (Lymphadenopathy/FHL), HP:0003212 (Increased circulating IgE level), HP:0002716 (Lymphadenopathy), HP:0009098 (Chronic oral candidiasis), HP:0002841 (Recurrent fungal infections), HP:0032326 (Methicillin-resistant Staphylococcus aureus infection), HP:0020271 (Increased lymph-node eosinophils), HP:0100827 (Lymphocytosis), HP:0003237 (Increased circulating IgG level), HP:0002090 (Pneumonia)

      CaseHPOFreeText: Eosinophils 17%, fungal scrapes—positive. Methicillin-resistant Staphylococcus aureus pneumonia, oral candidiasis/Hyper IgE.

      Suspected recurring pneumonia.

      CaseNotHPOs: N/A.

      CaseNotHPOFreeText: N/A.

      CasePreviousTesting: N/A.

      CaseMethod1: N/A.

      CaseMethod2: N/A.

      CaseGenotypingMethod: Sanger sequencing and NGS targeting a customized panel of genes.

      Variant: NM_005026.5:c.2296G>A.

      ClinVar: 846790.

      CAID: CA577485.

      gnomAD: 0.00001611. https://gnomad.broadinstitute.org/variant/1-9722305-G-A?dataset=gnomad_r4.

      VariantEvidence: N/A.

      CaseAddInfo: N/A.

      CasePMIDs: N/A.

    1. Comprehensive comparison between 222 CTLA-4 haploinsufficiency and 212 LRBA deficiency patients: a systematic review

      PMID: 33788257

      Gene: CTLA4

      HGNC: 2505

      Disease: autoimmune lymphoproliferative syndrome due to CTLA4 haploinsufficiency

      MONDO: 0014493

      InheritancePattern: autosomal dominant

      Prevalence: <1 in 1,000,000

      Penetrance: The penetrance of the phenotype among carriers of pathogenic variants is incomplete.

    1. Case 2 is a 6‐year‐old Japanese girl born at 36 weeks of gestation with a birth length of 43.1 cm (−1.3 SD relative to the average for this gestational age) and birth weight of 1,544 g (−2.7 SD relative to the average for this gestational age) (Table 1). At birth, she was suspected to have Silver‐Russell syndrome because of intrauterine growth retardation (IUGR). Her height was 104.0 cm and weight 12.6 kg at the time of evaluation for this study, indicating no apparent short stature (−1.0 SD relative to the average for this age). Her fasting plasma glucose, serum IRI concentrations, and serum C‐peptide were 108 mg/dL, 56.4 μIU/mL, and 6.95 ng/mL, respectively, with an HbA1c level of 5.2%. Her HOMA‐IR was 15.0, and her HOMA‐β was 451.2%. She manifested facial characteristics of SHORT syndrome (Figure 1a,b) and had a hearing impairment, with a hearing threshold of 30 and 50 dB in the right and left ears, respectively. Otitis media was apparent in the right ear, but not in the left.

      Case#: 6‐year‐old Japanese female

      DiseaseAssertion: Patients are asserted to have “SHORT syndrome” and “harbor either a common or a previously unknown mutation in PIK3R1 as well as provide an in silico functional analysis of the mutant proteins.”

      FamilyInfo: No relevant family history

      CasePresentingHPOs: HP:0001511, HP:0000855, HP:0004322, HP:0000490, HP:0000684, HP:0000325, HP:0000430, HP:0000400, HP:0000369, HP:0005328, HP:0000545, HP:0000963, HP:0007392, HP:0000365

      CaseHPOFreeText: Born with a birth length of 43.1 cm (−1.3 SD relative to the average for this gestational age) and birth weight of 1,544 g (−2.7 SD relative to the average for this gestational age). Her height was 104.0 cm and weight 12.6 kg at the time of evaluation for this study, indicating no apparent short stature (−1.0 SD relative to the average for this age). Her fasting plasma glucose, serum IRI concentrations, and serum C‐peptide were 108 mg/dL, 56.4 μIU/mL, and 6.95 ng/mL, respectively, with an HbA1c level of 5.2%. Her HOMA‐IR was 15.0, and her HOMA‐β was 451.2%. She had a hearing threshold of 30 and 50 dB in the right and left ears, respectively. Otitis media was apparent in the right ear, but not in the left. Patient had readily visible veins.

      CaseNotHPOs: HP:0000819, HP:0001382, HP:0000023, HP:0011220, HP:0000331, HP:0000233, HP:0002714, HP:0000540, HP:0000483, HP:0000593, HP:0000501, HP:0100578, HP:0001249, HP:0000750

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: NR

      GenotypingMethod: Initially, comprehensive sequencing analysis was conducted on all 22 exons of the INSR gene using the Sanger sequencing method, confirming the absence of pathogenic variants. Subsequently, sequencing was extended to encompass all 16 exons of the PIK3R1 gene.

      PreviouslyPublished: No

      Variant: NM_181523.3:c.1945C>T

      ClinVar: 60763

      gnomAD: NR

      SupplementalData: Table 1, Figure 1a,b

    2. Case 4 is a 33‐year‐old Japanese male, the father of case 3 (Table 1, Figure 1e,f). He was born at 36 weeks of gestation with a birth weight of 1,970 g and has had a severe bilateral sensorineural hearing impairment and used hearing aids since infancy. He was also diagnosed with glaucoma shortly after birth and with diabetes at 32 years of age, having been treated with a DPP‐IV (dipeptidyl peptidase‐IV) inhibitor and an SGLT2 inhibitor and manifesting an HbA1c level of 7.4% at the time of the current evaluation. He underwent a 75‐g oral glucose tolerance test for the present study, and his blood glucose and serum IRI levels at baseline and at 30, 60, 90, and 120 min after the glucose load were 130, 220, 238, 243, and 252 mg/dL and 8.0, 15.5, 25.6, 27.1, and 24.6 μIU/mL, respectively. His HOMA‐IR, HOMA‐β, and insulinogenic index were 2.57, 43.0%, and 0.083, respectively. His mother also manifests some facial characteristics of SHORT syndrome as well as a hearing impairment.

      Case#: 33-year‐old Japanese male

      DiseaseAssertion: Patients are asserted to have “SHORT syndrome” and “harbor either a common or a previously unknown mutation in PIK3R1 as well as provide an in silico functional analysis of the mutant proteins.”

      FamilyInfo: His daughter has SHORT syndrome, with the same variant of PIK3R1, NM_181523.3:c.1957A>T, further described in Case 3. His mother also manifests some facial characteristics of SHORT syndrome as well as a hearing impairment.

      CasePresentingHPOs: HP:0008619, HP:0000365, HP:0000501, HP:0000819, HP:0001511, HP:0004322, HP:0000023, HP:0000490, HP:0000558, HP:0000325, HP:0011220, HP:0000430, HP:0000331, HP:0000400, HP:0005328, HP:0100578

      CaseHPOFreeText: He was born at 36 weeks of gestation with a birth weight of 1,970 g. Weight at time of diagnosis was 44.2 kg (-2.4 SD), height 154 cm (-3.00SD) , body mass index 18.6 kg/m2 (-1.5 SD). He had been treated with a DPP‐IV (dipeptidyl peptidase‐IV) inhibitor and an SGLT2 inhibitor and manifesting an HbA1c level of 7.4% at the time of the current evaluation. His blood glucose and serum IRI levels at baseline and at 30, 60, 90, and 120 min after the glucose load were 130, 220, 238, 243, and 252 mg/dL and 8.0, 15.5, 25.6, 27.1, and 24.6 μIU/mL, respectively. His HOMA‐IR, HOMA‐β, and insulinogenic index were 2.57, 43.0%, and 0.083, respectively.

      CaseNotHPOs: HP:0000855, HP:0001382, HP:0000684, HP:0000369, HP:0000233, HP:0002714, HP:0000540, HP:0000483, HP:0000545, HP:0000593, HP:0000963, HP:0007392, HP:0001249, HP:0000750

      CaseNotHPOFreeText: Readily visible veins

      CasePreviousTesting: NR

      GenotypingMethod: Initially, comprehensive sequencing analysis was conducted on all 22 exons of the INSR gene using the Sanger sequencing method, confirming the absence of pathogenic variants. Subsequently, sequencing was extended to encompass all 16 exons of the PIK3R1 gene.

      PreviouslyPublished: No

      Variant: NM_181523.3:c.1957A>T

      ClinVar: 3767319

      gnomAD: NR

      SupplementalData: Table 1, Figure 1e,f

    1. Patient 3 (P3)

      Case#: Patient 3 (P3) is a 20-year-old Chinese female.

      DiseaseAssertion: Patients are asserted to have "CTLA4 haploinsufficiency (CTLA-4 h).

      FamilyInfo: The patient's brother died at age 15 from pancytopenia. The patient's mother was diagnosed with large granular lymphocytic leukemia. Patient's mother (Patient 4) also harbors the same CTLA4 variant as the patient. Authors do not indicate if patient's brother had genetic testing.

      CasePresentingHPOs: HP:0001744 (Splenomegaly), HP:0001369 (Arthritis), HP:0020062 (Decreased hemoglobin concentration), HP:0011873 (Abnormal platelet count), HP:0002254 (Intermittent diarrhea), HP:0001876 (Pancytopenia), HP:0020026 (Positive Coombs test)

      CaseHPOFreeText: Patients symptoms onset at 9 years old with chronic eczema, Evans syndrome, and splenomegaly. Initially responded well to corticosteroids and IV Ig, but relapsed after steroid tapering. She developed polyarthritis at age 16, diagnosed as juvenile idiopathic arthritis. She also developed photosensitive rashes. She was hospitalized due to pancytopenia and heavy vaginal bleeding. Anti-kertain antibody (AKA) and antiperinuclear factor were negative. Treatment with subcutaneous abatacept injections (125mg) resolved joint pain and brought hemoglobin and platelet counts to normal range.

      CaseNotHPOs: HP:0003493 (Antinuclear antibody positivity), HP:0034092 (Anti-cyclic citrullinated peptide antibody positivity), HP:0002923 (Rheumatoid factor positive),

      CasePreviousTesting: None reported.

      GenotypingMethod: Genotyping was performed via whole exome sequencing.

      PreviouslyPublished: No prior article is known to contain information on the same proband.

      Variant: The patient is heterozygous for the NM_005214.4 CTLA4):c.347T>A (p.Ile116Asn) variant.

      ClinVar: 2430678

      gnomAD: The variant was not found in gnomAD v4.1.1.

      SupplementalData: There is no supplemental data.

    1. Case 1

      Case#: Hui_2016, female, 2 yo (presentation), origin NR

      DiseaseAssertion: APDS

      FamilyInfo: variants verified in patient's parents, found to be de novo. It is unclear if case 2 and case 4 are related or unrelated.

      CasePresentingHPOs: recurrent respiratory infections, enlargement of lymph node, hepatosplenomegaly, decreased number of native CD4 + T cells, inverted CD4 + /CD8 + T cell ratio and increased IgM, decreased IgA, decreased IgG,

      HP:0002205, HP:0002716, HP:0001433, HP:0002720, HP:0032218, HP:0033222, HP:0002720, HP:0003496

      CaseHPOFreeText: cytomegalovirus (CMV) or Epstein-Barr virus (EBV) viremia

      CaseNotHPOs: NR

      CaseNotHPOFreeText: NR

      CasePreviousTesting: NR

      GenotypingMethod: WGS

      PreviouslyPublished: NR

      Variant: HOMOZYGOUS 3061G>A (E1021K)

      ClinVarID: 88675

      CAID: N/A

      gnomAD: not found in v2.1.1

      SupplementalData: unknown

      Note: Full access to article denied. Info in annotation gathered from abstract. Also, please be advised the curator translated the article from Chinese to English, and mistranslations are possible.

    1. The

      Case#: Case 1, male

      DiseaseAssertion: APDS

      FamilyInfo: non-related Caucasian parents

      CaseHPOFreeText: Suffered from Haemophilus b epiglottitis at the age of 2. He had received only one vaccine dose against diphtheria, tetanus, and poliomyelitis, due to parental choice, and had a history of recurrent respiratory tract infections. Biological features at diagnosis included: reduced serum levels of IgG2 and IgG4, normal IgA, IgG1, and IgG3 levels, and elevated IgM levels. The total lymphocyte count was normal but with quantitatively decreased T cells and CD21+ B cells, and an immune profile in favor of excessive memory CD4+ T cells. Later on, he suffered from frequent respiratory tract infections and a chest computed-tomography showed bronchiectasis at the age of 4. Digestive symptoms also appeared at the age of 4 when he presented with hematochezia related to colic malacoplakia (polypoid mucosal infiltration with histiocytes containing intra-cytoplasmic inclusions stained by Michaelis-Gutmann coloration) and lymphoid hyperplasia, which were both diagnosed on gastro-intestinal biopsies. From the age of 8 onward, he began to experience diarrhea that was linked to infections by Giardia and Cryptosporidium (diagnosed through acid-fast staining performed on stool samples). The cryptosporidiosis evolved toward a chronic infection with multiple episodic recurrences. He then developed celiac-mesenteric and hepatic lymphadenopathy, chronic ileitis with malabsorption syndrome, colitis with exudative diarrhea, and cholestasis with mild hepatic cytolysis due to grade II hepatic fibrosis (chronic hepatitis with inflammation and portal fibrosis, Metavir scoring F2-F3) with no sclerotic cholangitis. A recurrence of cryptosporidiosis accompanied by a C. difficile infection led to another intensive care unit stay, at the age of 9. Lymphadenopathy increased thereafter, with the appearance of hepatosplenomegaly, but lymphoma was not diagnosed on biopsies. He also developed cutaneous candidiasis, asymptomatic EBV reactivation (age 10) and persistent shedding of Adenovirus in the stools without viremia. The biological phenotype also worsened with time, leading to a TlowBlowNK+ CID. The evolution of the main immunologic parameters is shown in Fig. 1. Further analyses identified the following: absence of class-switched B cells, low and temporary immunoglobulin response to tetanus and diphtheria antigens and no response to Pneumococcus or Haemophilus b antigens, no lymphocyte proliferation to antigens after revaccination, and low or nonexistent proliferation with mitogens. Immunological explorations performed up to the age of 9 did not provide us with the precise diagnosis: IL-6 and IL-10 levels, double negative T cells, ADA and PNP levels, class I and II HLA molecules and CD40L, sequencing of CD40L and RAG1/2 genes, and Vβ repertoire of T cells were all normal. Proliferation of B cells with CD40L and IL-4 was present but weak.

      CasePreviousTesting: No previous testing

      GenotypingMethod: we decided to sequence PIK3CD in our patient. Sanger?

      Variant: the E1021K mutation was identified.

      CAID: CA145460

      gnomAD: Absent from gnonAD v2.1.1

    1. Patient 1

      Case#: Case 1

      DiseaseAssertion: APDS

      FamilyInfo: no familial history of PID

      CaseHPOFreeText: He was referred to our hospital at the age of 2 years with recurrent bronchopulmonary infections, lymphadenopathy, hepato-splenomegaly, liver disease (elevated transaminases and portal septal fibrosis at liver biopsy). He had increased serum IgM levels (4.25g/L), normal IgG (5.7 g/L) and decreased IgA (0.65g/L) levels, compatible with the diagnosis of CSR-D. The CD40L and CD40 defects were excluded and intravenous IgG substitution was initiated. At 8 years of age, he developed a high grade diffuse large B-cell lymphoma (DLBCL, WHO classification) of biliary tract (Figure 1 a-c). In situ hybridization for Epstein Barr virus (EBV) was negative and Bcl-6 was expressed as shown by immunohistochemistry. The patient recovered after nine courses of chemotherapy (UKCCSG 9002 protocol; “see E3”). At 19 years of age, under IgG substitution, he again developed a high grade EBV(-) DLBCL of the colon, which was found to be Bcl-6 negative (Figure 1 d-f). He received CHOP (Cyclophophamide, vincristine, steroids) plus rituximab. He died from large bowel perforation and bleeding 12 days after the third course of chemotherapy.

      CasePreviousTesting: None. Genotyping only done at position c.3061 of PIK3CD

      GenotypingMethod: We genotyped the PIK3CD gene at position c.3061G as described previously (1) in a cohort of 139 patients with immunological phenotype of Ig CSR-D. We found 8 new APDS patients with the E1021K heterozygous mutation in the PIK3CD gene

      Variant: E1021K

      CAID: CA145460

      gnomAD: absent in gnomAD v2.1.1

      SupplementalData: Clinical features of patients 3-8 in supplementary

    1. Table 4. Clinical features of the patients with positive whole exome sequencing results.

      Case#: 15-year-old boy

      DiseaseAssertion: SHORT syndrome and Immunodeficiency 36

      FamilyInfo: Table2 Father is wild type, mother was unavailable for testing. Consanguinity was reported at Table 4. No affected family members Table4.

      CasePresentingHPOs: HP:0001511(Intrauterine growth retardation) HP:0004322(Short stature) HP:0000325(Triangular face) HP:0010751(Dimple chin) HP:0000684(Delayed eruption of teeth) HP:0000347(micrognathia) HP:0100750(Atelectasis) HP:0004469(chronic bronchitis) HP:0002110(bronchiectasis) HP:0002720(Decreased circulating IgA level) HP:0011342(Mild global developmental delay) HP:0004279(short hands) HP:0000954(Single transverse palmar crease) HP:0002205(Recurrent respiratory infections)

      CaseHPOFreeText:

      CaseNotHPOs: Height -5.5 to -6.1 SDS

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: CMA and MS-MLPA for chromosomes 6,14,20 was performed.

      GenotypingMethod: Whole-exome sequencing was performed on the patient’s whole blood sample.

      PreviouslyPublished: No

      Variant: NM_001242466.2:c.68G > A p.Arg23Gln

      ClinVar: 1361868

      CAID: CA3290343

      gnomAD: 0.00005439 https://gnomad.broadinstitute.org/variant/5-67589169-G-A

    1. One of the patients has a novel mutation (E1025G) that has not been previously reported

      Case#: Dulau_Florea_2018_10, M, 7 y.o. (report), origin in ?

      DiseaseAssertion: APDS

      FamilyInfo:

      CasePresentingHPOs: EBV viremia (HP:0020072), Varicella after live vaccine (HP:0032170), sinopulmonary infection (HP:0005425), lymphadenopathy (HP:0002716), nodular lymph hyperplasia in the intestine (HP:0011956), splenomegaly (HP:0001744),<br /> elevated IgM (HP:0003496), decreased IgG (HP:0004315), decreased IgA (HP:0002720), Granulocytic hyperplasia (HP:0012138),

      HP:0020072, HP:0032170, HP:0005425, HP:0002716, HP:0011956, HP:0001744, HP:0003496, HP:0004315, HP:0002720, HP:0012138

      CaseHPOFreeText: abnormal IgE, decreased T4/T8 ratio, DAT autoantibodis present, 95% cellularity BM morphology, B cell expansion observed

      CaseNotHPOs: lymphoma (HP:0002665)

      CaseNotHPOFreeText:

      CasePreviousTesting:

      GenotypingMethod: unknown

      PreviouslyPublished:

      Variant: heterozygous NM_005026.5:c.3061G>A (p.E1025G)

      ClinVarID: 422410

      CAID: CA16617216

      gnomAD: Not present in gnomAD

      SupplementalData: Phenotypic info in supplemental table E2

    1. c.251T>C

      Case#: N/A. Patient was the only one included in this paper. Female. Age of Onset: 28 y.o. Age of evaluation: 28 y.o. Origin not specified but looking at the author information, I believe it can be safely inferred that the patient is originally from Japan.

      DiseaseAssertion: CTLA4 haploinsufficiency in a patient with Epstein–Barr virus-positive diffuse large B-cell lymphoma and subsequent benign lymphadenopathy

      FamilyInfo: A missense mutation in exon 2 of the CTLA4 gene (c.251T>C, p.V84A) was found in the patient’s peripheral blood and buccal cell DNA, but not in her parents’ DNA.

      Neither of the parents had this mutant allele of CTLA4 (Figure 3A) and the case was considered to be sporadic.

      CasePresentingHPOs: HP:0001047 (Atopic dermatitis), HP:0012378 (fatigue), HP:0001945 (fever), HP:0002716 (Lymphadenopathy/swollen lymph nodes), HP:0001744 (splenomegaly).

      CaseHPOFreeText: Mild atopic dermatitis, high fever, multiple swollen lymph nodes, systemic lymphadenopathy and multiple bone lesions.

      CTLA4 expression decreased in the peripheral regulatory T cells upon stimulation, whereas CTLA4 and PD-1-positive T cell subsets increased, possibly to compensate for the defective CTLA4 function

      Although the patient had no history of autoimmune disease or specific infections, her uncommon clinical course led us to perform genetic screening for congenital immune dysfunction, and a missense germline mutation in CTLA4 was identified.

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: Immunohistochemistry was performed with antibodies against the following proteins: CD20 (346595, BD Biosciences, San Jose, CA), CD3 (349201, BD Biosciences), CD30 (clone Ber-H2, Roche, Mannheim, Germany), CD15 (Carb-3, Dako, Santa Barbara, CA), Ki-67 (clone MIB-1, Dako), EBV LMP-1 (CS-1-4, Dako), EBV EBNA2 (PE2, Dako), CTLA4 (sc-376016, Santa Cruz Biotechnology, Santa Cruz, CA), and FOXP3 (clone PCH101, eBioscience, San Diego, CA). Immunohistochemistry was performed using an automatic immunostainer (BenchMark, Ventana Medical Systems, Tucson, AZ and BOND-III system, Leica Microsystems, Bannockburn, IL) in accordance with the manufacturer’s instructions.

      Epstein–Barr virus detection was performed by in situ hybridization using an EBV-encoded small non-polyadenylated RNA probe on an automated system (Ventana Medical systems for Figure 1B, g, and Leica Microsystems for Figure 2B, e).

      Peripheral blood mononuclear cells were separated from the peripheral blood of the patient and two healthy donors using a Ficoll-Paque density gradient (Cedarlane), and total T cells were collected by negative selection using MACS Cell Separation Technology (Miltenyi Biotec, Bergisch Gladbach, Germany). Total RNA was extracted using the RNeasy Mini kit, and complementary DNA (cDNA) was synthesized using a SuperScript III First-Star and Synthesis system (Life Technologies, Carlsbad, CA, USA). qRT-PCR was performed using TB Green Premix Ex Taq II (Takara Bio, Otsu, Japan). The primers used for the amplification are listed in Table 1. The expression levels of FOXP3, CTLA4, and PDCD1 were normalized to that of ACTB.

      [18F]-Fluorodeoxy-d-glucose positron emission tomography (FDG-PET)-computed tomography (CT) revealed systemic lymphadenopathy, splenomegaly, and multiple bone lesions (Figure 1A). Laboratory data included increases in lactate dehydrogenase (LDH) to 1,127 IU/L (normal range, 117–236 IU/L), soluble interleukin-2 receptor (sIL-2R) to 10,500 U/mL (145–519 U/mL), and β2-microglobulin to 4.6 µg/mL (1.0–1.9 µg/mL). Serum IgG and IgA moderately decreased to 651 mg/dL (870–1,700 mg/dL) and 28 mg/dL (110–410 mg/dL), respectively, whereas IgM was normal (78 mg/dL; normal range 35–220 mg/dL). The patient’s serum was negative for human immunodeficiency virus-1 antibody.

      Histological analysis of the biopsied right axillar lymph node first led to a diagnosis of classic Hodgkin lymphoma (cHL), but the diagnosis was later revised to EBV-positive DLBCL with a T-cell-rich large B-cell lymphoma-like pattern (Figure 1B). The large tumor cells were positive for CD20, CD30 (weak, 30%), and EBV-encoded small RNA (EBER)-in situ hybridization (ISH), and negative for CD3 and CD15. Ki-67 was positive in 80% of the tumor cells. The tumor cells expressed EBV latent membrane protein 1 (LMP-1), but lacked EBV nuclear antigen 2 (EBNA2), and exhibited a type 2 latency pattern (Figure 1C). The patient was treated with one cycle of ABVD (doxorubicin, bleomycin, vinblastine, and dacarbazine) and six cycles of R-CHOP (rituximab, cyclophosphamide, doxorubicin, vincristine, and prednisolone), and achieved complete remission.

      Two years later, the patient developed cervical lymph node swelling (Figure 2A). Although the relapse of DLBCL was suspected, histological analysis of the biopsied cervical lymph node revealed only reactive follicular hyperplasia with a few, small EBER-positive cells (Figure 2B, a-e). The patient had normal blood cell counts with a relatively low lymphocyte count of 590/µL (normal range, 400–3,700/µL) and normal lymphocyte subsets (CD3+ T cells, 72.1%; CD3+CD4+ T cells, 38.5%; CD3+CD8+ T cells, 28.1%; CD56+ NK cells, 12.7%; CD19+ B cells, 15.2%). However, the serum immunoglobulin levels further decreased (IgG 320 mg/dL, IgA 10 mg/dL, IgM 40 mg/dL). The serum EBV-DNA was 190 copies/µg of DNA when evaluated after 1 cycle of ABVD and became negative after the next cycle of chemotherapy. However, it became positive again half a year before the appearance of lymphadenopathy and remained positive at low levels thereafter (20–60 copies/µg of DNA).

      Persisting lymphadenopathy with low immunoglobulin levels and serum EBV-DNA positivity led us to consider the possibility of congenital immune dysfunction.

      We evaluated CTLA4 expression upon stimulation of peripheral regulatory T cells, which was markedly reduced according to flow cytometry6 (Figure 3B), and the patient was diagnosed with CTLA4 haploinsufficiency.

      GenotypingMethod: The patient’s peripheral blood DNA was screened for germline mutations (Kazusa DNA Research Institute, Chiba, Japan). A missense mutation in exon 2 of the CTLA4 gene (c.251T>C, p.V84A) was found and the mutation was confirmed by Sanger sequencing of the patient’s buccal cell DNA.

      PreviouslyPublished: N/A

      Variant: NM_001037631.2:c.251T>C

      ClinVarID: N/A

      CAID: CA350138385

      gnomAD: N/A

      SupplementalData: N/A

      Note: Not functionally tested using transendocytosis

    1. Immune dysregulation in human subjects with heterozygous germline mutations in CTLA4

      PMID: 25213377

      Gene: CTLA4

      HGNC: 2505

      Disease: Autoimmune lymphoproliferative syndrome due to CTLA4 haploinsuffiency (also known as Autoimmune lymphoproliferative syndrome type V)

      MONDO: 0014493

      InheritancePattern: Autosomal Dominant

      Prevalence: Estimated to be <1 in 1,000,000

      Penetrance: More than 67% penetrant (PMID: 29729943), with childhood, adolescent, or adult onset

  2. Jul 2026
    1. 13/8 35 0.017 163 0 – 3 – 3 4 L541P R1098C

      Case#: Patient 13, 35yo

      DiseaseAssertion: STGD

      FamilyInfo: Family 8

      CasePresentingHPOs:

      CaseHPOFreeText: Visual acuity=0.017. OCT ft (μm)=163. MP (dB)=0. Fundus=3(extensive atrophic-appearing RPE changes). ERG=3(abnormal responses involving both rods and cones). mfERG=4(subnormal mfERG in the entire test field (0°–30°) plus pathologic Ganzfeld ERG).

      CaseNotHPOs:

      CaseNotHPOFreeText:

      GenotypingMethod: PCR of coding regions, intron/exon boundaries, and 5′ and 3′ regions of ABCA4; Standard cycle-sequencing reactions with BigDye Terminator

      PreviouslyPublished:

      Variant: L541P; R1098C

      CAID: CA226911;

      SupplementalData: n/a

    1. (http://genetics.bwh.harvard.edu/pph2/). In addition, mutation taster predicted both L168F and L168S variant as disease-causing with PROVEAN predictions of L168F (-2.767) and L168S (-4.083) as deleterious (https://www.mutationtaster.org/). As such, it was not surprising that the L168S variant patient had much more severe disease onset and rapid progression compared to other SCA34-causing ELOVL4 variants. For example, a patient carrying the T233M ELOVL4 variant was reported to develop ataxia starting at 15 years of age [10]. However, at the time of examination of this patient at 60 years of age, an MRI of the brain showed only subtle flattening of the ventral pons and mild cerebellar atrophy [10]. Another patient carrying the Q180P ELOVL4 variant developed ataxia in his mid-20 s and showed cerebellar and pontine atrophy [11]. Japanese patients also carrying the W256G variant developed gait ataxia between 13–56 years of age [12]. However, disease progression was reported to be very slow, and patients did not require assistance with walking with a walker or cane until the age of 60 years or older [12]. Taken together, it looks like the nature of the mutation and its effect on normal ELOVL4 function most likely through defects in VLC-FA biosynthesis or conformational changes in protein structure are critical to disease onset and severity of the pathologies.

      SupplementalData:

    2. (http://genetics.bwh.harvard.edu/pph2/). In addition, mutation taster predicted both L168F and L168S variant as disease-causing with PROVEAN predictions of L168F (-2.767) and L168S (-4.083) as deleterious (https://www.mutationtaster.org/). As such, it was not surprising that the L168S variant patient had much more severe disease onset and rapid progression compared to other SCA34-causing ELOVL4 variants. For example, a patient carrying the T233M ELOVL4 variant was reported to develop ataxia starting at 15 years of age [10]. However, at the time of examination of this patient at 60 years of age, an MRI of the brain showed only subtle flattening of the ventral pons and mild cerebellar atrophy [10]. Another patient carrying the Q180P ELOVL4 variant developed ataxia in his mid-20 s and showed cerebellar and pontine atrophy [11]. Japanese patients also carrying the W256G variant developed gait ataxia between 13–56 years of age [12]. However, disease progression was reported to be very slow, and patients did not require assistance with walking with a walker or cane until the age of 60 years or older [12]. Taken together, it looks like the nature of the mutation and its effect on normal ELOVL4 function most likely through defects in VLC-FA biosynthesis or conformational changes in protein structure are critical to disease onset and severity of the pathologies.

      SupplementalData:

    1. The proband (Patient #20

      Case#: Female, family #5, Patient #20

      DiseaseAssertion: STGD

      FamilyInfo: Proband's sister presented with same clinical prognosis. Sister diagnosed with pattern dystrophy and photoaversion at age 57, with difficulty seeing at night. Sister has nuclear sclerotic and cortical cataracts in both eyes.

      CasePresentingHPOs: HP:0000662, HP:0000603, HP:0000603, HP:0000493

      CaseHPOFreeText: Proband presented with localized blur at age 62, (late onset) in her left eye. BVCA 20/20-3 and 20/20-2 at age 70. Also has macular lesions with stage 2 fundus flecks.

      CaseNotHPOs: n/a

      CaseNotHPOFreeText: n/a

      Genotyping Method: Genotyping performed at Columbia University, sequencing technology used is not disclosed.

      PreviouslyPublished: n/a

      Variant: p.N18681, IVS36:c.5196+1G>A

      ClinVar: M2) 99067, M6) 99351

      CAID: N/A

      SupplementalData: Fig 1: Pedigree illustrating ABCA4 variants and the associated Stargardt phenotype for 5 families. Proband Labeled w/ white arrow for each family. Fig 2: retinal scan measuring melanin in 4 patients of family 2. Panel shows bull's-eye ring of RPE atropy. Fig 3: Macular SD-OCT line profile from b-scans. Reflectivity plotted against function of retinal depth. Table 1: table shows patients with p.N18681 variant, type of mutation, and pathogenicity class. Table 2: Patients, age on-set and first symptom

    1. F17-003

      Case#: Patient 225, Female, age of onset 7 y.o, Poland

      DiseaseAssertion: STGD-1

      FamilyInfo: no given family information.

      CasePresentingHPOs: HP:0007722, HP:0000608, HP:0025158

      CaseHPOFreeText: RPE atrophy, macular degeneration, central hyper-autofluorescence in fundus autofluorescence

      CaseNotHPOs: n/a

      CaseNotHPOFreeText: n/a, non-proband identified HPO's mentioned, but not assignable to individual proband.

      Genotyping Method: DNA isolated from peripheral blood from patients and relatives via MagNA Pure 24, samples screened with MIPs targeting 108 genes involved in pathogensis of IRD's. PCR completed on library, analysed with NGS fragment analysis kit.

      PreviouslyPublished: yes

      Variant: c.[1622T>C;3113C>T]

      ClinVar: 99067, 7894

      CAID: n/a

      gnomeAD 0.0001266 allele frequency

      SupplementalData: Fig1: List of families displaying pseudo-dominant inheritance. Fig2: Number of alleles for most common variants.

    1. 4.4. Disease Course in Patients Harbouring p.(Gly1961Glu) or p.(Asn1868Ile) Allele

      It is known that patients harbouring p.(Gly1961Glu) or p.(Asn1868Ile) allele share some common clinical characteristics and present with a milder disease phenotype than patients carrying other alleles. A typical feature of patients with p.(Gly1961Glu) is BEM, which is otherwise present in around 20% of all STGD1 patients.

    2. 4.4. Disease Course in Patients Harbouring p.(Gly1961Glu) or p.(Asn1868Ile) Allele

      It is known that patients harbouring p.(Gly1961Glu) or p.(Asn1868Ile) allele share some common clinical characteristics and present with a milder disease phenotype than patients carrying other alleles. A typical feature of patients with p.(Gly1961Glu) is BEM, which is otherwise present in around 20% of all STGD1 patients.

    1. 10/22/MClinical, geneticPartial deletion, protein truncating mutation++++−

      PatientID: 10

      KindredID: 10

      Case: M, 22Y0M, Caucasian

      DiseaseAssertion: VHL

      FamilyInfo: Positive family history.

      CohortInfo: Case series of 14 patients with definite or presumed von Hippel-Lindau disease and retinal vascular proliferation.

      CasePresentingHPOs: HP:0002011, HP:0001732, HP:0007850, HP:0012210, HP:0009711 (Morphological central nervous system abnormality, abnormality of the pancreas, retinal vascular proliferation, abnormal renal morphology, retinal capillary hemangioma)

      CaseHPOFreeText: At age 12, his left eye had a large juxtapapillary vascular complex extending from the nerve along the superior arcade that was associated with dense fibrovascular tissue. During the next 29 months, this fibrovascular complex enlarged, extending into the center of the macula and causing a decrease in visual acuity to 20/80. The patient underwent pars plana vitrectomy and membrane peel. When the patient was reexamined 7 years after his surgery, there was no recurrence of the lesion. In the patient's contralateral right eye, 3 typical peripheral RCHs were observed during this 7-year follow-up. At age 14 years, he was also noted to have a small patch of superficial retinal vessels in the inferior retinal quadrant near the equator of the right eye that resembled an arteriovenous anastomosis.

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: Partial Deletion

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: N/A

      CAID: N/A

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: deletion

      CivicName:Null (Partial deletion)

      MultipleGeneVariants: N/A

    1. Complete deletion

      GroupID/ KindredID: 28

      PatientID: II

      Case: 24Y0M, Sex unknown, Polish

      DiseaseAssertion: VHL

      FamilyInfo: Family 28 consisted of 4 members; one relative (age 27Y) was found with multiple cerebellar HABs at 25Y, and multiple spinal HABs, another (40Y) diagnosed at 30Y with multiple cerebellar HABs, and multiple spinal HABs, and a final relative (62Y), diagnosed with a single HAB.

      CasePresentingHPOs: HP:0006880 (cerebellar hemangioblastoma)

      CaseHPOFreeText: Patient was diagnosed with a single cerebellar HAB at 24Y

      GroupNotHPOs: HP:0009713; HP:0009711; HP:0005584 (spinal hemangioblastoma, retinal capillary hemangioma; renal cell carcinoma)

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: complete deletion of VHL gene

      CaseProblemVariantFreeText: N/A

      LegacyVariant: N/A

      ClinVarID: N/A

      CAID: N/A

      gnomAD: N/A

      VariantEvidence: Haplotype analysis information in Table 3

      MutationType: deletion

      CivicName: deletion

      MultipleGeneVariants: N/A

    1. 4 partial deletions

      GroupID/ KindredID: 22

      Case: Age unknown, Sex unknown, Chinese

      DiseaseAssertion: hemangioblastoma

      FamilyInfo: No family history. Genetic testing of their parents confirmed a de novo mutation.

      CasePresentingHPOs: HP:0010797 (hemangioblastoma)

      CaseHPOFreeText: N/A

      CaseNotHPOs: HP:0002666; HP:0005584; HP:0009711; HP:0001732 (pheochromocytoma; renal cell carcinoma; retinal capillary hemangioma; pancreatic lesion)

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: Exon 1 deletion

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVar: N/A

      CAID: N/A

      gnomAD: N/A

      VariantEvidence:N/A

      MutationType: exon_loss_variant

      CivicName: Exon 1 Deletion

      MultipleGeneVariants: N/A

    1. In four families, partial deletions of one or more exons were detected by Southern blot analysis

      PatientID: unknown (brother)

      KindredID: A

      Case: M (deceased), Age unknown, Turkish

      DiseaseAssertion: assumed VHL

      FamilyInfo: 5 family members are grouped with this deletion (ages 16-37Y; mean 31Y). VHL was clinically diagnosed in, at minimum, the proband. See Fig. 2 for family pedigree. This patient and his one brother were not tested for the DNA deletion however it is assumed by the authors due to the segregation observed.

      CasePresentingHPOs: HP:0010797 (hemangioblastoma)

      CaseHPOFreeText: N/A

      CaseNotHPOs: HP:0009711; HP:0002666; HP:0005584 (retinal capillary hemangioma; pheochromocytoma; renal cell carcinoma)

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: Deletion of exons 1 and 2

      CaseProblemVariantFreeText: N/A

      LegacyVariant: N/A

      ClinVarID: N/A

      CAID: N/A

      gnomAD: N/A

      VariantEvidence: not tested for the DNA deletion however it is assumed by the authors due to the segregation observed.

      MutationType: exon_loss_variant

      CivicName: exon 1-2 deletion

      MultipleGeneVariants: N/A

    1. GroupID/ KindredID: F28

      Case: Sex unknown, 23Y0M, Spanish

      DiseaseAssertion: assumed VHL

      FamilyInfo: familial antecedents found; unknown of any additional features of index case relatives

      CasePresentingHPOs: HP:0000107; HP:0009711; HP:0006880; HP:0006770; HP:0002666 (renal cysts, retinal capillary hemangioma, cerebellar hemangioblastoma, clear cell renal cell carcinoma, pheochromocytoma)

      CaseHPOFreeText: unilateral pheo, bilateral ccRCC and multiple lesions were found with the patient’s renal cysts. Age of onset is 23Y0M.

      CaseNotHPOs: HP:0001737 (pancreatic cysts)

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: rearrangement (unspecified)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: N/A

      CAID: N/A

      gnomAD: N/A

      VariantEvidence: Southern blot positive

      MutationType: rearrangement_region

      CivicName: Rearrangement

      MultipleGeneVariants: N/A

    1. PatientID: 246

      KindredID: 246

      Case: Sex Unknown, 26Y0M, Ethnicity Unknown

      DiseaseAssertion: VHL

      FamilyInfo: N/A

      CasePresentingHPOs: HP:0010797; HP:0009711; HP:0006770 (Hemangioblastoma, Retinal capillary hemangioma, Clear cell renal cell carcinoma)

      CaseHPOFreeText: CNS and retinal hemangioblastoma and clear cell renal cell carcinoma.

      CaseNotHPOs: HP:0002666; HP:0000107; HP:0001732 (Pheochromocytoma, Renal cyst, Abnormality of the pancreas)

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished:N/A

      SupplementalData: Table S1, S2 and S3

      Variant: Partial Deletion (0.7kb)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: N/A

      CAID: N/A

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: deletion

      CivicName: Partial deletion of 0.7kb

      MultipleGeneVariants: N/A

    1. 16 different families

      PatientID: IX-I

      KindredID: 9

      Case: M, 68Y0M, Ethnicity Unknown

      DiseaseAssertion: VHL

      FamilyInfo: No family history reported.

      CasePresentingHPOs: HP:0006748; HP:0002668; HP:0030405; HP:0001737; HP:0006880 (adrenal pheochromocytoma, paraganglioma, pancreatic endocrine tumor, pancreatic cyst, cerebellar hemangioblastoma)

      CaseHPOFreeText: Patient presented with adrenal pheochromocytoma, paraganglioma, pancreatic endocrine tumor, pancreatic cyst, and cerebellar hemangioblastoma at age 55Y0M and was diagnosed with VHL type 2A (see table 2).

      CaseNotHPOs: HP:0000107; HP:0005584 (renal cyst; renal cell carcinoma)

      CaseNotHPOFreeText: Patient negative for renal cell carcinoma and renal cysts.

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: complete deletion

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: N/A

      CAID: N/A

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: deletion

      CivicName: NULL (deletion)

      MultipleGeneVariants: N/A

    1. Comparably, the result of the CNTNAP2 rs2710102 associations with ASD studies (n = 4+current study) was also not significant [n = 7276; p = 0.26; OR = 1.028 (95 % CI 0.98–1.08), see Suppl. Table S6, Fig. 1b]

      Performed a meta-analysis of all data published on the rs2710102 CNTNAP2 variant up to 2015, and included Anney et al, 2012 (PMID: 20663923), Toma et al., 2013 (PMID: 23277129), Sampath et al, 2013 (PMID: 24147096), Poot et al., 2014 (PMID: 25337070 ), plus there current cohort.

      No significant increase in cases vs controls for CNTNAP2 rs2710102

      While this data does help support Contradictory evidence for CNTNAP2 involvement in autism, the lack of reporting of the total number of controls, as well as the number of cases and controls with the SNP prevents me from curating this information within the ClinGen gene curation interface.

    2. he meta-analysis of the CNTNAP2 rs7794745 associations with ASD studies (n = 5+current study) did not result in significant association with ASD in general [n = 8576; p = 0.112; OR = 1.023 (95 % CI 0.99–1.05); see Suppl. Table S5, Fig. 1a]. Since we detected some heterogeneity for the SNP rs7794745 according to the funnel plot (see Suppl. Figure S10), we performed an additional meta-analysis synthesis using the random effect model. However, no significant association with ASD was observed and OR were very similar as for the fixed-model [OR = 1.081 (95 % CI 0.976–1.196), p = 0.133; for details Suppl. Table S9a].

      Performed a meta-analysis of all data published on the rs7794745 CNTNAP2 variant up to 2015, and included Arking et al., 2008 (PMID:18179894), Li et al 2010 (PMID: 20414140), Anney et al, 2012 (PMID: 20663923), Toma et al., 2013 (PMID: 23277129), Sampath et al, 2013 (PMID: 24147096), plus there current cohort.

      No significant increase in cases vs controls for CNTNAP2 rs7794745

    1. Similar

      CaseControlLabel: Toma 2013 CNTNAP2 rs7794745 analysis

      CaseCohortLabel: 322 Autism patients

      ControlCohortLabel: 524 controls

      CaseCohortDisease: MONDO:0005260 (Autism)

      CaseCohortPhenotype:

      CaseCohortPhenotypesFreeText: Authors indicate that all individuals fulfilled DSM-IV criteria for autism or Asperger disorder. Additionally, some cases included where diagnosed with pervasive developmental disorder they may or may not have been characterized based on ADI-R and ADOS-G.

      CaseControlNOTPhenotype:

      CaseControlNOTPhenotypeFreeText:

      CaseDemographics: 269 men, 53 women, Average age= = 17y.o. of Spanish and/or Caucasian descent.

      ControlDemographics: controls were noted to be sex-matched and unrelated, however no numbers or ages were indicated. Sample obtained from the Blood and Tissues Bank of Hospital Universitari Vali d'Hebron.

      CaseGenotypingMethod: One SNP, rs7794745, was genotyped using PCR-RFLP, from DNA obtained from peripheral blood lymphocytes (salting out method).

      ControlGenotypingMethod: One SNP, rs7794745, was genotyped using PCR-RFLP, from DNA obtained from peripheral blood lymphocytes (salting out method).

      CasePower: 312/322

      ControlPower: 505/524

      CaseAddInfo: Other genetic variation is not noted.

      ControlAddInfo: Other genetic variation is not noted.

      CaseControlStudyType: Single Variant Analysis

      CaseControlDetectionMethod: Cases and controls genotyped for single variant

      CaseControlStats: p-value= 0.87

      CaseControlBias: Cases and controls are ethinically matched, and noted to be sex-matched.

      CaseControlComments:

    1. (GRIN2B, rs7301328)

      Case: Multiple individuals with the same GRIN2B variant (the mean age was 76 ± 11 SD years (Range: 38–101), the mean age at PD onset was 67 ± 12 SD years (Range: 32–94), and 421 patients (63%) were male).

      Disease Assertion: Parkinson's disease

      FamilyInfo: None

      CasePresentingHPOs: HP:0001300

      CaseHPOFreeText: Parkinson's disease

      CaseNotHPOs: HP:0001250

      CasePreviousTesting: Polymorphism genotyping on Sequenom iPLEX ® platform

      PreviouslyPublished: No

      Variant: rs7301328

      ClinVarID: 129205

    1. Table 2.

      Case#:Not assigned

      DiseaseAssertion:MPS type I with evidence of cognitive impairment defined as a score of at least 1 SD below mean on IQ testing or in one domain of neuropsychological function; attenuated MPS I

      FamilyInfo:No information

      CasePresentingHPOs:HP:0100543

      CaseHPOFreeText:

      CaseNotHPOs:HP:0032557

      CaseNotHPOFreeText:Subjects were excluded if they had undergone hematopoietic stem cell transplantation, were unable to comply with study procedures, had significant lumbar pathology precluding access to the intrathecal space via lumbar puncture, or significantly impaired spinal CSF flow as detected on a nuclear medicine flow study as part of screening.

      CaseEnzymeAssay:No information

      CaseUrineGAGs:No information

      CaseERT:Yes

      CaseBMT:No (exclusion criterion)

      Variant1:L238Q

      Variant1ClinVarID:265418

      Variant1CAID:

      Variant2:W402X

      Variant2ClinVarID:

      Variant2CAID:

      AdditionalVariants:N/A

      ParentalGenotype:Not specified

      PreviouslyPublished

    2. Table 2.

      Case#:Not assigned

      DiseaseAssertion:MPS type I with evidence of cognitive impairment defined as a score of at least 1 SD below mean on IQ testing or in one domain of neuropsychological function; attenuated MPS I

      FamilyInfo:No information

      CasePresentingHPOs:HP:0100543

      CaseHPOFreeText:

      CaseNotHPOs:HP:0032557

      CaseNotHPOFreeText:Subjects were excluded if they had undergone hematopoietic stem cell transplantation, were unable to comply with study procedures, had significant lumbar pathology precluding access to the intrathecal space via lumbar puncture, or significantly impaired spinal CSF flow as detected on a nuclear medicine flow study as part of screening.

      CaseEnzymeAssay:No information

      CaseUrineGAGs:No information

      CaseERT:Yes

      CaseBMT:No (exclusion criterion)

      Variant1:L238Q

      Variant1ClinVarID:265418

      Variant1CAID:

      Variant2:63delC

      Variant2ClinVarID:

      Variant2CAID:

      AdditionalVariants:N/A

      ParentalGenotype:Not specified

      PreviouslyPublished

    3. Table 2.

      Case#:Not assigned

      DiseaseAssertion:MPS type I with evidence of cognitive impairment defined as a score of at least 1 SD below mean on IQ testing or in one domain of neuropsychological function; attenuated MPS I

      FamilyInfo:No information

      CasePresentingHPOs:HP:0100543

      CaseHPOFreeText:

      CaseNotHPOs:HP:0032557

      CaseNotHPOFreeText:Subjects were excluded if they had undergone hematopoietic stem cell transplantation, were unable to comply with study procedures, had significant lumbar pathology precluding access to the intrathecal space via lumbar puncture, or significantly impaired spinal CSF flow as detected on a nuclear medicine flow study as part of screening.

      CaseEnzymeAssay:No information

      CaseUrineGAGs:No information

      CaseERT:Yes

      CaseBMT:No (exclusion criterion)

      Variant1:65delC

      Variant1ClinVarID:

      Variant1CAID:

      Variant2:H240R

      Variant2ClinVarID:947028

      Variant2CAID:

      AdditionalVariants:N/A

      ParentalGenotype:Not specified

      PreviouslyPublished

    1. Patient 1

      Case:Patient 1, Male, 4 y/o, German and Thai

      DiseaseAssertion:FOXG1 syndrome

      FamilyInfo: Non-consanguineous parents. De novo. Patient 1 has maternally inherited duplications at 15q21.12(47292250-47309868)x3 and Xp22.31(6451676-8115124)x3 of unknown clinical significance.

      ParentalGenotype:Not provided

      CasePresentingHPOs:HP:0002197, HP:0005484, HP:0011344, HP:0001252, HP:0020045,HP:0000540, HP:0010808, HP:0002019, HP:0003781, HP:0012741, HP:0002421, HP:0000748, HP:0003763, HP:5200017, HP:0025112, HP:0000957

      CaseHPOFreeText: At 19 months, could not sit independently and no speech development. Stereotypic hand and head movements. High pain tolerance. X-ray at age 2 showed broad ribs. Improved head control by age 4.

      CaseNotHPO:HP:0410263, HP:0002376

      CaseNotHPOFreeText:Dysmorphic features. breathing abnormalities

      CasePreviousTesting:No previous testing

      PreviouslyPublished:Not previously published

      GenotypingMethod:Mate-pair sequencing, Sanger sequencing

      Gene:FOXG1

      Variant:46,XY,t(9;14)(q22.3;q11.2)dn

      HGVS:Not provided

      ClinVarID:426096

      gnomAD:Not provided

    2. Patient 3

      Case:Patient 3, Male, 1 y/o, Brazilian

      DiseaseAssertion: FOXG1 syndrome

      FamilyInfo: Non-consanguineous parents

      ParentalGenotype: No family testing mentioned.

      CasePresentingHPOs: HP:0000252, HP:0001252, HP:0000486

      CaseHPOFreeText: Developed microcephaly within 1 year. Developmental delay, unable to sit without assistance at 1 year old. Central Nervous System (CNS) MRI showed a volumetric reduction of the cerebral parenchyma, hypomyelination, and hypoplasia of corpus callosum mainly involving the anterior part and prominent lateral ventricles

      CaseNotHPO: HP:0030917

      CaseNotHPOFreeText: Normal length, weight, HC at birth. No retinal abnormalities.

      CasePreviousTesting: Not asserted.

      PreviouslyPublished: Not previously published.

      GenotypingMethod: Sanger sequencing, mate-pair sequencing

      Gene: FOXG1

      Variant: 46,XY,t(2;14)(q37;q11.2)dn

      HGVS: Not provided.

      ClinVarID:426094

      gnomAD:Not provided

    3. Patient 2

      Case:Patient 2, Female, 5 y/o, Brazilian

      DiseaseAssertion:quadriplegic cerebral palsy with axial hypotonia and distal spasticity

      FamilyInfo: Non-consanguineous parents. Parents had normal karyotypes. Older sister was clinically normal.

      ParentalGenotype: Normal karyotypes for both parents.

      CasePresentingHPOs: HP:0002098, HP:0010959, HP:0008755, HP:0002090, HP:0032661, HP:0001274, HP:0011344, HP:0001249, HP:0001344, HP:0000748, HP:0034435, HP:0000486, HP:0000483, HP:0200136

      CaseHPOFreeText: Dilated superficial blood vessels seen on brain MRI.

      CaseNotHPO:N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: Not asserted

      PreviouslyPublished: Not previously published

      GenotypingMethod:Mate-pair sequencing, Sanger sequencing, chromosome analysis

      Gene: FOXG1

      Variant: 46,XX,t(4;14)(q27;q13)dn

      HGVS: Not provided

      ClinVarID: 426095

      gnomAD: Not provided

    1. (A) With ARL2BP, photoreceptor OS develops normally, with correct DMT formation, axoneme extension, and disk alignment.

      Selection A- Gene with same function implicated in disease

      ExperimentName: Moye et al. 2018

      GOterm: GO:0051179 (localization)

      FunctionalEvidence: It was discovered that without ARL2BP, the photoreceptor OS does not develop normally or have correct DMT formation, axoneme extension, and disk alignment.

      HGNC: HGNC:10295 (RPGR), HGNC:10263 (RP1), HGNC:6816 (MAK)

      GeneEvidence: ARL2BP, RPGR, RP1 and MAK are all localized within the ciliary basal body and rootlet.

      SharedGeneImplication: RPGR was classified as having a "definitive" relationship with RP 15 by the Retina GCEP. Refer to the curation for further details. RP1 was classified as having a "definitive" relationship with RP1 by the Retina GCEP. Refer to the curation for further details. MAK was classified as having a "definitive" relationship with MAK-related retinopathy by the Retina GCEP. Refer to the curation for further details.

    1. RSPH1 and RSPH9, here highlighted, are known to be components of the RS head in human respiratory cilia

      Selection A- Gene with same function implicated in disease

      ExperimentName: Aprea et al. 2023

      GOterm: GO:0001535 (radial spoke head)

      FunctionalEvidence: Taken together, our results indicate that the ruler proteins CCDC39 and CCDC40, the radial spoke head proteins RSPH1 and RSPH9 as well as the central pair associated apparatus proteins SPEF2 and HYDIN have a similar functional role in motile cilia and sperm flagella, as hypothesized in Figure 1.

      HGNC: HGNC:12371

      GeneEvidence: PMID: 24518672 documents how RSPH1 and RSPH9, which encode homologs of components of the ‘head’ structure of ciliary radial spoke complexes identified in Chlamydomonas, cause clinical phenotypes that appear to be indistinguishable except at the gene level. They both also have a relationship with PCD.

      SharedGeneImplication: The gene-disease relationship between RSPH1 and PCD has been established and published in multiple papers. See Motile Ciliopathy GCEP curations of RSPH1 for more information.

    1. (B) Schematic of the axonemal 96 nm repeat unit, including the composition of the IDA subspecies and the location of axonemal components. DNAH7, DNAH6, and DNAH1 are highlighted in purple, orange, and yellow, respectively. The stalks of the IDA dynein heavy chains are highlighted in blue or pink, depending on whether they are associated with DNALI1 or CETN2. The CCDC39/40 ruler complex is depicted in light and dark green.

      Selection A- Gene with same function implicated in disease

      ExperimentName: Wilken et al. 2024

      GOterm: GO:0036156 (inner dynein arm).

      FunctionalEvidence: Both DNAH6 and DNAH1 are both IDA components and localized to the same region.

      HGNC: HGNC:2940 (DNAH1).

      GeneEvidence: Both DNAH6 and DNAH1 are both IDA components and localized to the same region.

      SharedGeneImplication: DNAH1 was classified as having a "limited" relationship with PCD 37 and a “defintive” relationship with spermatogenic failure 18 by the Motile Ciliopathy GCEP. Refer to the curation for further details.

    1. Four genes cause PCD through radial spoke defects - RSPH9 (Chr 6), RSPH4A (Chr 6), RSPH3 (Chr 6), and RSPH1 (Chr 21). These mutations produce various defects at the junction of the radial spoke heads and the central apparatus, resulting in diverse ciliary ultrastructure changes on TEM.

      Selection A - Gene with same function implicated in disease

      ExperimentName: Shapiro 2007 et al.

      GOterm: GO:0051179 (localization)

      FunctionalEvidence: RSPH3 and RSPH9 are both localized to radial spoke heads and have a similar phenotype profile.

      HGNC: HGNC:21057.

      GeneEvidence: PMID: 20301301 documents how RSPH9 and RSPH3, which encode homologs of components of the ‘head’ structure of ciliary radial spoke complexes identified in Chlamydomonas, cause clinical phenotypes that appear to be indistinguishable except at the gene level. They both also have a relationship with PCD.

      SharedGeneImplication: The gene-disease relationship between RSPH9 and PCD has been established and published in multiple papers. See Motile Ciliopathy GCEP curations of RSPH9 for more information.

    1. The source focuses on the clinical, immunological, and molecular features of Severe Combined Immune Deficiency (SCID) based on a multi-institutional experience from India. The specific gene studied in this case is IL2RG. The HGNCID for this gene is HGNC:6016. The sources provide information about a 6-month-old male patient with SCID. The patient's family history suggests a possible X-linked inheritance pattern. The sources note the absence of autoimmunity and malignancies in the patient. Information regarding the patient's variant, previous testing, and publication history is not available in the sources.

    1. 52

      Case#:Patient 52, female, 3 years old

      DiseaseAssertion:Neonatal/Infantile Epileptic Encephalopathy (NIEE)

      FamilyInfo:DeNovo. The family is Chinese

      ParentalGenotype:The authors only conducted singleton and not trio-based exome sequencing so the parents' exomes were not sequenced.

      CasePresentingHPOs:HP:0011344, HP:0002069, HP:0007359, HP:0011097, HP:0100704, HP:0001332, HP:0002072, HP:0012171.

      CaseHPOFreeText:Patient 52 presents with severe global developmental delay and epilepsy.

      Patient 52 has generalized tonic/clonic/tonic-clonic seizures, focal seizures and spasms. Patient 52's seizure onset occurred at 3 months old.

      Patient 52 has cortical visual impairment (CVI), dystonia, chorea, and hand-washing sterotypies.

      Patient History

      @ 3 months - Patient 52 had generalized tonic/clonic/tonic-clonic seizures.

      Patient 52 was on 3 antiepileptic drugs at most recent follow-up visit which reduced seizure frequency by >50%.

      CaseNotHPOs:Not provided

      CaseNotHPOFreeText:Not provided

      CasePreviousTesting:The authors selected a cohort of 31 patients with seizure cryptogenic Neonatal/Infantile Epileptic Encephalopathy (NIEE) and seizure onset before 24 months.

      Exclusion criteria included: (1) Patients with a definite history of brain insult, malformation of cortical development, neurocutaneous and syndromal disorders, and confirmed or highly suspected neurometabolic disorders based on clinical and biochemical markers. (2) Patients with Dravet syndrome and epilepsy at infancy with migrating focal seizure were also excluded because the majority of variants are detected in the SCN1A (>85%) and KCNT1 (approximately 50%) genes.

      Formal neuropsychological testing or best clinical assessment was used to classify patient development or intelligence.

      PreviouslyPublished:Not previously published

      GenotypingMethod:Whole Exome Sequencing (WES) variant results were filtered in a panel of 430 epilepsy-associated genes. After selection of variants from the 430-gene panel, the synonymous variants, variants with variant frequency <10%, and variants with allele frequency >1% were removed.

      Gene:CDKL5

      Variant:NM_003159.2 c. 1849delC (p. Arg617Valfs*4)

      The authors state that the variant is a heterozygous frameshift deletion.

      The authors state that this is a novel variant and is pathogenic.

      HGVS:Not provided

      ClinVarID:Not found

      CAID:Not found.

      gnomAD:Not found

      MultipleGeneVariants:Not provided

    2. 7

      Case#:Patient 7, male, 5 years old

      DiseaseAssertion:Neonatal/Infantile Epileptic Encephalopathy (NIEE)

      FamilyInfo:The family is French/Chinese

      ParentalGenotype:The variant was inherited from Patient 7's asymptomatic mother.

      CasePresentingHPOs:HP:0010864, HP:0012758, HP:0000729, HP:0007359, HP:0002069, HP:0032794, HP:0001250, HP:0000252.

      CaseHPOFreeText:Patient 7 presents with severe intellectual disability, developmental slowdown, and various seizure types. Patient 7 has Autistic Spectrum Disorder (ASD) and microcephaly.

      Patient History

      @ 12 months - Patient 7 presented with seizures.

      Patient 7 developed additional seizure types including: focal seizures with/without generalization, generalized tonic/clonic/tonic-clonic seizures, myoclonic seizures, and hypomotor seizures.

      Patient 7 was on two antiepileptic drugs at most recent followup visit which reduced seizure frequency by >50%.

      CaseNotHPOs:Not provided

      CaseNotHPOFreeText:Not provided

      CasePreviousTesting:The authors selected a cohort of 31 patients with seizure cryptogenic Neonatal/Infantile Epileptic Encephalopathy (NIEE) and seizure onset before 24 months.

      Exclusion criteria included: (1) Patients with a definite history of brain insult, malformation of cortical development, neurocutaneous and syndromal disorders, and confirmed or highly suspected neurometabolic disorders based on clinical and biochemical markers. (2) Patients with Dravet syndrome and epilepsy at infancy with migrating focal seizure were also excluded because the majority of variants are detected in the SCN1A (>85%) and KCNT1 (approximately 50%) genes.

      Formal neuropsychological testing or best clinical assessment was used to classify patient development or intelligence.

      PreviouslyPublished:Not previously published

      GenotypingMethod:Whole Exome Sequencing (WES) variant results were filtered in a panel of 430 epilepsy-associated genes. After selection of variants from the 430-gene panel, the synonymous variants, variants with variant frequency <10%, and variants with allele frequency >1% were removed.

      Gene:SLC9A6

      Variant:Hemizygous splice site NM_001042537.1 c. 794-2A>G was assessed by the authors to be likely pathogenic.

      HGVS:Not provided

      ClinVarID:Not found

      CAID:CA414750320

      gnomAD:Not found

      MultipleGeneVariants:Not provided

    1. Case  1

      Case: Patient 1, female, 2 years old

      DiseaseAssertion: Rett Syndrome

      FamilyInfo: DeNovo. Patient 1 was the second child of a nonconsanguineous Chinese couple. Patient 1 was born at full term with a birth weight of 3.83 kg.

      ParentalGenotype(s):Not provided

      CasePresentingHPOs:HP:0011344, HP:0001250, HP:0001252, HP:0000252, HP:0000748, HP:0003763, HP:0005469, HP:0000486, HP:0012171.

      CaseHPOFreeRext:Patient 1 presents with severe global developmental delay, epilepsy, and hypotonia. The Patient History contains all of Patient 1's phenotypes along with the progression of her condition.

      Patient History

      @ 3 months - Patient 1 had microcephaly (head circumference was less than 3rd percentile with a body weight and body height at 75th percentile). Patient 1 had hypotonia.

      Patient 1 was given a metabolic screening, a muscle enzyme, and a brain tomography with normal results.

      @ 6 months - Patient 1 had microcephaly, flat occiput, right divergent squint, and hypotonia. No syndromal diagnosis could be ascertained at that time.

      @ 2 years - Patient 1 had epilepsy.

      Patient 1 had severe global development delay.

      Patient 1 was given an EEG which showed nonspecific background slowing, but no epileptiform abnormalities. Patient 1 was also given a brain MRI which showed mild thinning of corpus callosum without major structural defect. Patient 1 had no developmental regression but she developed stereotypical hand movements, bruxism, and occasional outburst of laughter.

      Based on these phenotypes, Angelman/Rett Syndrome was suspected.

      CaseNOTHPOs: HP:0002353.

      CaseNOTHPOFreeText: Patient 1 was given an EEG which detected no epileptic abnormalites.

      CasePreviousTesting: Genetic investigations (including methylation-specific multiplex ligation-dependent probe amplification (MS-MLLPA)) was conducted for Angelman Syndrome, UBE3A gene, MECP gene, and array CGH. These studies were negative. A FOXG1 related disease was suspected

      PreviouslyPublished:Not previously published

      GenotypingMethod: A FOXG1 gene test showed a de novo frameshift pathogenic mutation FOXG1 {NM_005249.3} c. 396_397ins26; FOXG1{NP_005240.3} :(p. Gly133TRPfs*68) which confirmed the diagnosis of a FOXG1 related congenital variant of Rett Syndrome.

      Gene:FOXG1

      Variant: (NM_005249.3) c. 396_397ins26 (p. Gly133Trpfs*68)

      HGVS:Not provided

      ClinVarID:Not found

      CAID:Not found

      gnomAD:Not found

    2. Case  2

      Case:Patient 2, female, Chinese

      DiseaseAssertion:Global delay

      FamilyInfo:Patient 2 was the first child of nonconsanguineous Chinese couple born at 38-week gestation. The mother had gestational diabetes mellitus that required insulin therapy.

      ParentalGenotype:Not provided

      CasePresentingHPOs:HP:0000365, HP:0020049, HP:0000252, HP:0001263, HP:0012171, HP:0000154, HP:0000708, HP:0003763, HP:0002376, HP:0012433.

      CaseHPOFreeText:

      Patient History

      @ birth - Patient 2 presented with mild grade bilateral hearing impairment and left divergent squint diagnosed at birth.

      @ Follow-up visit - Patient 2 had microbrachycephaly and global developmental delay. Brain MRI, metabolic screening and array CGH were normal.

      @ 1 year - Patient 2 had stereotypical handwashing movement.

      There was no clinical or electrical seizure.

      Patient 2 has craniofacial features like microbrachycephaly, wide mouth, divergent squint, and behavioral phenotype.

      @ 1.5 years - Patient 2 had bruxism and developmental regression. Patient 2 also had loss of some motor and social skills.

      CaseNotHPOs:HP:0001250

      CaseNotHPOFreeText:Patient 2 has no seizures.

      CasePreviousTesting:Not provided

      PreviouslyPublished:Not previously published

      GenotypingMethod:Not provided

      Gene:MECP2 (MN_004992.3) (NP_004983.1)

      Variant:c. 808C>T (p. Arg270*)

      HGVS:Not provided

      ClinVarID:Not found

      CAID:CA172577

      gnomAD:Not found

      MultipleGeneVariants:NA

    1. first patient

      Case:Patient 1, female, 11 years old

      DiseaseAssertion:Rett Syndrome - Atypical Variant

      FamilyInfo:De Novo. Patient 1's parents were healthy. When Patient 1 was clinically examined, the head circumferences of her mother and father were 53 cm (P25) and 59 cm (P90), respectively. The parents had normal weight.

      ParentalGenotype:Both parents were sequenced for Patient 1's mutation, and the deletion was not detected.

      CasePresentingHPOs:HP:0001249, HP:0001513, HP:0001626, HP:0000256, HP:0010465, HP:0012758, HP:0000750, HP:0012433, HP:0002591, HP:0001250, HP:0020174, HP:0000316, HP:0000336, HP:0000431, HP:0000377, HP:0000470, HP:0001156, HP:0001500.

      CaseHPOFreeText:

      Patient history

      @ birth - Patient 1 was born at 38 weeks of gestation after an uncomplicated pregnancy. Her weight was 3,390 g (P69), height 51 cm (P60), and her head circumference was 36 cm (P90).

      @ 6 months - Patient 1 experienced developmental delay.

      @ 9 months - Patient 1 sat without support.

      @ 2 years - Patient 1 began to walk.

      @ later on - Patient 1 presented with speech delay and behavioral disturbances. The behavioral disturbances were reduced by the drug risperidone.

      @ early childhood - Patient 1 has been obese and appeared to display hyperphagia.

      @ 8 years - Patient 1 developed precocious puberty.

      @ 10 years - Patient 1 had her first epileptic seizure. Treatment with lamotrigine prevented further seizures. The seizures later became refractory to this treatment.

      @ 10 years - Patient 1 presented with a height of 160 cm (P>97) and a head circumference of 59 cm (P>97). She had hypertelorism and prominent eyebrows. Her nasal bridge was broad and auricles were fleshy. In addition, Patient 1's neck was short and the fingers were short and wide.

      Patient 1 has an intellectual disability, metabolic syndrome, and macrocephaly.

      CaseNotHPOs:HP:0002540.

      CaseNotHPOFreeText:Patient 1 sat without support at 9 months old. She walked at 2 years.

      CasePreviousTesting:Patient 1 was given a conventional cytogenetic analysis. The chromosomal analyses (46,XX) and array CGH results (BlueGnome CytoChip ISCA 4×180K v1.0; Agilent Human Genome CGH Microarray 180K) were normal. Patient 1 was also given a methylation-specific MLPA to exclude a Temple syndrome, which is also characterized by weight gain and precocious puberty. In addition, Prader-Willi syndrome was ruled out by methylation testing. This syndrome is another imprinting disease causing obesity and intellectual disability.

      PreviouslyPublished:Not previously published

      GenotypingMethod:Whole-exome sequencing analysis of the entire exome was conducted for Patient 1. Whole-genome sequencing showed heterozygosity in Patient 1, which was confirmed by Sanger sequencing. Macrocephalic syndrome genes including PTEN, NSD1, NFIX, SETBP1, RAI1, and PHF6 were analyzed, and no additional variants of interest (pathogenic, likely pathogenic, or variants of uncertain significance) were observed.

      Gene:MECP2

      Variant:c. 1162_1172del (p. Pro388*), heterozygosity, frameshift.

      HGVS:NM_004992.3

      ClinVarID:Not found

      CAID:CA1139667881

      gnomAD:Not found

      MultipleGeneVariants:Not provided

    1. Patient 2

      Case:Patient 2, female, 2.5 years old

      DiseaseAssertion:CDKL5 Disorder

      FamilyInfo:De Novo with an unremarkable family history.

      ParentalGenotype:Not provided

      CasePresentingHPOs:HP:0032792, HP:0007359, HP:0011154, HP:0002194, HP:0010862, HP:0000750, HP:0012434, HP:0000710, HP:0100023, HP:0000252, HP:0009062, HP:0010845, HP:0020174, HP:0010841.

      CaseHPOFreeText:

      Patient history

      @ 2 months to 2.5 years - Patient 2 experienced tonic and focal seizures with autonomic symptoms.

      @ 2 years - Patient 2 was diagnosed with CDKL5 disorder.

      Patient 2 had severe delayed gross motor development, severe delayed fine motor development, severe delayed language development and delayed social development. Patient 2 had hyperoral and hand flapping stereotypies. She also had microcephaly (< 2 SD) and axial hypotonia.

      Patient 2 was given a brain EEG which detected Delta slowing of the background followed by generalized attenuation during seizures and multifocal interictal epileptiform abnormalities.

      @ 2.5 years - Patient 2 experienced seizures in clusters.

      Treatments

      Antiepleptic treatments included:Phenobarbital, Topirimate, Clobazam, Valproate, Keppra, Vitamin B6, Phenytoin, Lamotrigine, Nitrazepam, Oxcarbazepine, Mirtazipine, KCI, Levetiracetam, ant ketogenic diet.

      Patient 2 was also treated with Carnitine. Patient 2's seizures seem to have changed in type over time but continued.

      Other testing

      Tests were conducted on Patient 2 to obtain data in the following areas: NBS, lactate, lipoprotein profile, plasma and urine amino acids, urine organic acids, acylcarnitine profile, total and free serum carnitine levels, plasma ammonia, total plasma homocysteine, serum CK, liver enzymes, urine alpha-AASA, creatine, biotinidase, VLCFA, Batten disease screen, CSF analysis (amino acids, lactate, glucose, protein, cell count, neurotransmitters), MRI-brain with spectroscopy, and karyotype.

      CaseNotHPOs:Not provided

      CaseNotHPOFreeText:Not provided

      CasePreviousTesting:Patient 2 was given a gene sequence test for the genes SCNIA and MECP2. No gene mutation was found for these two genes.

      PreviouslyPublished:Not previously published

      GenotypingMethod:Patient 2 was given a CDKL5 gene sequence test. The test detected a mutation in the CDKL5 gene.

      Gene:CDKL5

      Variant:c. 2480_2486dupCAGATCT. frameshift

      The authors state that CDKL5 gene sequencing detected a de novo duplication in exon 17, c. 2480_2486dupCAGATCT, resulting in a frameshift (Boston University School of Medicine, Center for Human Genetics, Boston, MA). This is a novel change that has not been reported before in ExAC. Only pathogenic point mutations in exon 17 have previously been reported. In a patient with a previously reported frameshift mutation in exon 18, a truncated CDKL5 transcript was detected. A truncated protein would lack the C-terminus and would not localize correctly in the cell, as demonstrated in vitro. Accordingly, any reading frame altering mutations proximal to exon 18 are null-variants. Therefore, this mutation is classified as pathogenic according to ACMG criteria.

      HGVS:Not provided

      ClinVarID:547188

      NM_001323289.2 (CDKL5): c. 2480_2486dup (p. Gln830fs)

      Allele ID: 538303

      CAID:Not found

      gnomAD:Not found

      MultipleGeneVariants:Not provided

    1. In this study, we report a 4-month-old boy with T−B+NK− SCID due to an unreported nonsense mutation in exon 2 of the IL2RG gene. The patient was derived from a twin pregnancy, and his twin brother was asymptomatic with no immune defects. In order to confirm the pathogenic effect of the detected novel variant on the protein structure, a modeling process was performed.

      Case: Patient, Male, 4 months old <br /> DiseaseAssertion: SCID <br /> FamilyInfo: third child of non-consanguineous parents; has twin brother that is asymptomatic with no immune defects; no family history of primary immunodeficiencies <br /> CasePresentingHPOs: HP:0002014, HP:0020099, HP:0030148 <br /> CaseHPOFreeText: diarrhea, norovirus infection, heart murmur <br /> CaseNotHPOs: increased CRP <br /> CasePreviousTesting: N/A <br /> Gene: IL2RG <br /> Variant: NM_000206(IL2RG): <br /> ClinVar: <br /> CAID: <br /> gnomAD: <br /> SupplementalData:

    1. Sixty-six individuals representing 54 families were studied (Supplementary Material, Table S1). All individuals were found to harbor two ABCA4 variants likely to cause the retinal disease (18,20–26). In 40 families (74%), independent segregation of the two alleles was demonstrated. The ages at the time of their first visit ranged from 9 to 74 years (mean = 35.9, median = 35.2 years); in the majority of individuals (36/66=55%), data were available from a second visit that occurred on average 8.7 years (range=2–20 years, median = 6.9 years) after the first visit.

      Case#: Patient #35, male, 35yo at report, 14yo at onset,

      DiseaseAssertion: STGD

      FamilyInfo: family 30, segregation was noted as "yes" but no other details provided

      CasePresentingHPOs:

      CaseHPOFreeText:

      CaseNotHPOs:

      CaseNotHPOFreeText:

      GenotypingMethod:

      PreviouslyPublished: n/a

      Variant: allele 1: A1038V;L541P allele 2: G818E

      ClinVar: 99135

      CAID: CA227000

      SupplementalData: supplemental table 1

    1. STGD87 2588G→C Q1750X Yes

      Case#: STGD87, 10-14yo at onset, German

      DiseaseAssertion: STGD

      FamilyInfo: segregation in family

      CasePresentingHPOs:

      CaseHPOFreeText: "The diagnosis of STGD was based on the demonstration of bilateral impairment of central vision and the appearance of perimacular and/or peripheral yellow-white flecks, with or without atrophy of the central retinal-pigment epithelium and a normal or only mildly abnormal flash electroretinogram when recorded in early stages of the disease."

      CaseNotHPOs:

      CaseNotHPOFreeText:

      GenotypingMethod: denaturing gradient gel electrophoresis, dHPLC, and SSCP analysis, PCR amplification of individual coding exons and flanking intron sequences, direct DNA sequencing

      PreviouslyPublished: n/a

      Variant: Q1750X; 2588G→C in trans "Correct segregation of disease alleles was demonstrated in all 39 cases in which family samples were available for study"

      ClinVar: 7879

      CAID: CA119128

      SupplementalData: n/a

    2. STGD47/164 IVS13+1G→A 2588G→C Yes

      Case#: STGD47/164, 10-14yo at onset, German

      DiseaseAssertion: STGD

      FamilyInfo: segregation in family

      CasePresentingHPOs:

      CaseHPOFreeText: "The diagnosis of STGD was based on the demonstration of bilateral impairment of central vision and the appearance of perimacular and/or peripheral yellow-white flecks, with or without atrophy of the central retinal-pigment epithelium and a normal or only mildly abnormal flash electroretinogram when recorded in early stages of the disease."

      CaseNotHPOs:

      CaseNotHPOFreeText:

      GenotypingMethod: denaturing gradient gel electrophoresis, dHPLC, and SSCP analysis, PCR amplification of individual coding exons and flanking intron sequences, direct DNA sequencing

      PreviouslyPublished: n/a

      Variant: IVS13+1G→A; 2588G→C in trans "Correct segregation of disease alleles was demonstrated in all 39 cases in which family samples were available for study"

      ClinVar: 7879

      CAID: CA119128

      SupplementalData: n/a

    1. Case 4A 52-year-old male was examined for declining vision OS over the past few months. He was previously clinically diagnosed with STGD 7 years before presentation. Family history was not significant for ocular disease. Best-corrected visual acuity measured 20/100 OD and 20/70 OS. Spherical refractive error measured −3.00 OD and −3.25 OS. Anterior segment examination was unremarkable and applanation tonometry measured 17 mmHg OD and 14 mmHg OS. Posterior segment examination was significant for central atrophy and classic peripheral pisciform flecks sparing the peripapillary regions OU (Figure 4, A and B). Autofluorescence imaging demonstrated inner atrophic flecks and outer hyperautofluorescent flecks. Moderate peripapillary hypoautofluorescence, but not atrophy, was present, likely secondary to the patient’s myopia (Figure 4, C and D). Genotyping revealed two heterozygous ABCA4 mutations, P1380L and S1696N.Open in a separate windowFig. 4Case 4. STGD mutation IVS40 + 5G>A. A, Color Photo OU. B, Red-Free Photo OU reveal central atrophy and classic peripheral pisciform flecks sparing the peripapillary regions OU. C, Autofluorescence OD. D, Autofluorescence OS show that the innermost flecks are hypoautofluorescent, consistent with atrophy, whereas the outermost flecks are hyperautofluorescent, demonstrating excess lipofuscin. There is moderate peripapillary hypoautofluorescence that is not as dark as this patient’s central atrophy or the peripapillary atrophy of Case 1. This finding may thus be due to the patient’s myopia.

      Case#: Hwang Case 4, male, 52yo at report, 45yo at onset

      DiseaseAssertion: Stargardt

      FamilyInfo: Family history was not significant for ocular disease.

      CasePresentingHPOs: HP:0000545

      CaseHPOFreeText: declining vision OS, BCVA was 20/100 OD and 20/70 OS. Spherical refractive error measured −3.00 OD and −3.25 OS. Posterior segment examination was significant for central atrophy and classic peripheral pisciform flecks sparing the peripapillary regions OU (Figure 4, A and B). Autofluorescence imaging demonstrated inner atrophic flecks and outer hyperautofluorescent flecks. Moderate peripapillary hypoautofluorescence, but not atrophy, was present (Figure 4, C and D).

      CaseNotHPOs: HP:0500087

      CaseNotHPOFreeText:

      GenotypingMethod: Genotyping was performed by the ABCR400 microarray followed by direct sequencing to confirm identified variants.

      PreviouslyPublished: n/a

      Variant: P1380L and S1696N

      ClinVar: 7904

      CAID: CA129033

      SupplementalData: n/a

    2. Case 1A 55-year-old male was examined for long-standing central visual impairment since age 18. Family history was not significant for ocular disease. His best-corrected visual acuity of 20/350 OD and 20/200 OS was consistent with measurements over the last 20 years. Spherical refractive error measured −3.5 OD and −2.0 OS. Anterior segment examination was unremarkable and applanation tonometry measured 17 mmHg OD and 14 mmHg OS. Posterior segment examination and autofluorescence imaging were significant for sharply demarcated central and peripapillary zones of atrophy and the absence of fleck lesions (Figure 1, A–D). Humphrey visual fields demonstrated bilateral central scotomas with eccentric fixation at the inferior border. ERG examination was subnormal and similar to results obtained 22 years ago.Open in a separate windowFig. 1Case 1. STGD with peripapillary atrophy and mutations P1380L and IVS40 + 5G>A. A, Autofluorescence OD. B, Color Photo OD. C, Autofluorescence OS. D, Color Photo OS. All show marked peripapillary and macular atrophy with a sharply demarcated zone of sparing between them. These characteristics caused initial diagnostic confusion with choroidal sclerosis.Genetic testing was employed for further diagnostic information and two heterozygous ABCA4 mutations, P1380L and IVS40 + 5G>A, were identified and classified as disease-causing alleles, thereby confirming the diagnosis of STGD.

      Case#: Hwang Case 1, US, male, 55yo at report, 18yo at onset

      DiseaseAssertion: Stargardt disease

      FamilyInfo: Family history was not significant for ocular disease

      CasePresentingHPOs: HP:0007663, HP:0500087, HP:0000603, HP:0000512

      CaseHPOFreeText: BCVA of 20/350 OD and 20/200 OS. Spherical refractive error measured −3.5 OD and −2.0 OS. Posterior segment examination and autofluorescence imaging were significant for sharply demarcated central and peripapillary zones of atrophy and the absence of fleck lesions (Figure 1, A–D). Humphrey visual fields demonstrated bilateral central scotomas with eccentric fixation at the inferior border.

      CaseNotHPOs:

      CaseNotHPOFreeText:

      GenotypingMethod: Genotyping was performed by the ABCR400 microarray followed by direct sequencing to confirm identified variants.

      PreviouslyPublished: n/a

      Variant: P1380L and IVS40 + 5G>A

      ClinVar: 7904

      CAID: CA129033

      SupplementalData: n/a

    1. 3 39 6/6 1 RCD Val552Ile 6/6

      Case#: Case 3, 39yo

      DiseaseAssertion: BEM, RCD

      FamilyInfo: n/a

      CasePresentingHPOs:

      CaseHPOFreeText: a ring of increased AF surrounding decreased foveal AF, visual acuity= 6/6, 6/6

      CaseNotHPOs:

      CaseNotHPOFreeText: acquired toxic aetiology

      GenotypingMethod: The entire coding sequence (50 exons), including exon–intron boundaries, of the ABCA4 gene of each patient was screened using single‐stranded conformational polymorphism (SSCP) analysis and direct sequencing.

      PreviouslyPublished: n/a

      Variant: Val552Ile heterozygous

      CAID: CA239745

      SupplementalData: n/a

    1. An uncommon case of retinitis pigmentosa patients basedon clinical and genetic studyAyudha Bahana Bahana Ilham Perdamaian, MSc2, Dewi Kartikawati Paramita, PhD3, Riris Istighfari Jenie,PhD4, Supanji Supanji, PhD11Universitas Gadjah Mada Fakultas Kedokteran Kesehatan Masyarakat dan Keperawatan, 2Doctorate Program of Health andMedicine Science, Faculty of Medicine, Public Health, and Nurse, Universitas Gadjah Mada, Yogyakarta, Indonesia. Departmentof Ophthalmology, Faculty of Medicine, Public Health and Nursing, Universitas Gadjah Mada, 3Department of Histology andMolecular Biology, Faculty of Medicine, Public Health and Nursing, Universitas Gadjah Mada, Yogyakarta, Indonesia,Integrated Research Laboratory, Faculty of Medicine, Public Health and Nursing, Universitas Gadjah Mada, Yogyakar,4Department of Pharmaceutical Chemistry, Faculty of Pharmacy, Gadjah Mada University, Yogyakarta, IndonesiaCASE REPORTThis article was accepted: 25 August 2024Corresponding Author: Supanji SupanjiEmail: supanji@ugm.ac.id19-An uncommon00304.qxp_3-PRIMARY.qxd 29/08/2024 3:47 PM Page 98

      PMID:39215425

      Gene: ABCA4

      HGNC ID: 34

      case27-year-old male, the brother of case 1

      DiseaseAssertion: Table 1 The summary of the clinical assessment of IRD patients’ family in this research fro there down they did a whole pannel on the family

      Pedigree one can be fore form the beggginnings of case presention section?

      CasePresentingHPOs: Case 2, a 27-year-old male, the brother of case 1 had blurry vision which was not corrected with an eyeglass and inconveniences under bright light starting from 14 years ago. Case 2 also underwent a fundus examination after finding that case 1 was RP. In further examination of those patients and their family members found that case 1 was confirmed as RP and case 2

      CaseHPOFreeText:NA

      CaseNotHPOs:NA

      CaseNotHPOFreeText:NA

      Genotyping Method:NA

      PreviouslyPublished:NA

      Variant:NA

      ClinVar:

      CAID:NA

      SupplementalData:NA

      Inheritance pattern Autosomal Recessive

    1. WDR19-associated retinopathy presenting with adult-onset Stargardt-likephenotype

      PMID:39967245

      Gene: ABCA4

      HGNC ID: 34

      Case#:39 man

      DiseaseAssertion:NA

      FamilyInfo:NA

      CasePresentingHPOs:Snellen in both eye, visual impairment with night blindnessisual acuity was 20/20Snellen in both eyes, with a minor correction for astig-matism. The anterior segment and intraocular pressurewere within normal limits. On fundus examination, dif-fuse fleck-like lesions were scattered both inside and out-side the arcades, while sharply demarcated areas ofmacular atrophy with foveal sparing, more pronouncedin the left eye, were visible.

      CaseHPOFreeText:NA

      CaseNotHPOs:NA

      CaseNotHPOFreeText:

      Genotyping Method:Next-Generation Sequencing (NGS), using theTruSight One Clinical Exome sequencing panel on anIllumina NexSeq500 platform, enriching for 4800 genesincluding ABCA4, CNGB3, ELOVL4, PROM1, and PRPH2

      PreviouslyPublished:Under refernces?

      Variant:WDR19 variants:the novel deletion at c.1777 + 1 within the donor splicingsite (class 4) and the rare c.1430 G>T variant causing theamino-acid substitution p.(Arg477Leu) (class 3) in the putative protein. Additionally, a heterozygous c.1793A>G(class 3) variant in the CDH23 gene was found, though it was deemed as not contributive to the patient’s clinical phenotype. All reported variants were confirmed throughSanger sequencing

      ClinVar:NA

      CAID:NA

      SupplementalData:NA

    1. The STGD patient from Family 12 is a compound heterozygous with p.Val931Met and a novel nonsense mutation at exon 33 (p.Glu1574X; Figure 1B). Disease onset for this patient was at age 43. Ophthalmic examination revealed moderate central retinal changes, decreased mfERG responses exclusively in the central 15 degrees, and decreased visual acuity.

      Case#: Family 12 Proband, male, 43yo at onset, Portuguese

      DiseaseAssertion: Stargardt

      FamilyInfo: no affected family members in pedigree (Fig. 1)

      CasePresentingHPOs: HP:0007663

      CaseHPOFreeText: "The criteria for STGD phenotype included bilateral central vision loss and pigmentary macular lesions, normal caliber of retinal vessels, absence of pigmented bone spicules, and compatibility with recessive mode of inheritance." Moderate central retinal changes, decreased mfERG responses exclusively in the central 15 degrees

      CaseNotHPOs:

      CaseNotHPOFreeText:

      PreviouslyPublished: n/a

      Variant: p.Glu1574X; p.Val931Met. Several other polymorphisms also reported. ABCR400 gene chip microarray, DHPLC

      ClinVar: 1460063

      CAID: CA341283936

      SupplementalData: n/a

    1. Mutation scanning and direct DNA sequencing of all 50 exons of ABCR were completed for 150 families segregating recessive Stargardt disease (STGD1). ABCR variations were identified in 173 (57%) disease chromosomes, the majority of which represent missense amino acid substitutions. These ABCR variants were not found in 220 unaffected control individuals (440 chromosomes) but do cosegregate with the disease in these families with STGD1, and many occur in conserved functional domains. Missense amino acid substitutions located in the amino terminal one-third of the protein appear to be associated with earlier onset of the disease and may represent misfolding alleles. The two most common mutant alleles, G1961E and A1038V, each identified in 16 of 173 disease chromosomes, composed 18.5% of mutations identified. G1961E has been associated previously, at a statistically significant level in the heterozygous state, with age-related macular degeneration (AMD). Clinical evaluation of these 150 families with STGD1 revealed a high frequency of AMD in first- and second-degree relatives. These findings support the hypothesis that compound heterozygous ABCR mutations are responsible for STGD1 and that some heterozygous ABCR mutations may enhance susceptibility to AMD.

      Annotating here since the full text is a PDF.

      Case#: Family AR321 proband, US, 6yo at onset

      DiseaseAssertion: Stargardt

      FamilyInfo: proband and two other siblings are affected

      CasePresentingHPOs: The essential and defining features of STGD were (1) pedigrees with at least one living affected individual compatible with autosomal recessive inheritance; (2) an ophthalmoscopically characteristic retinal disorder in families with both parents living; (3) bilateral central visual loss with both “beaten metal” elliptical foveal dystrophy and temporal pallor of the optic discs, documented by retinal color photography, with or without yellow-pigment epithelial flecks in the macular and/or retinal “near periphery”; and (4) the characteristic fluorescein angiographic feature of a dark choroid (Blacharski 1988).

      CaseHPOFreeText:

      CaseNotHPOs:

      CaseNotHPOFreeText: (1) evidence of autosomal dominant inheritance; (2) any history of night blindness, loss of peripheral vision, or "retinitis pigmentosa"; (3) cataracta complicata or cells in the vitreous; (4) substantially abnormal electroretinographic or electrooculographic responses; (5) no fluorescein angiography performed or no dark choroid documented; (6) neurological disease (including loss of cognition or seizures); 7) drug exposures (especially to antimalarial and agents known to cause crystalline retinopathies); or (8) any "atypical" maculopathies in which a unique diagnosis of STGD could not be established.

      PreviouslyPublished: PMID: 8533764

      Variant: c.3113C>T p.A1038V; c.1715G>C p.R572P . Heteroduplex and SSCP analyses were used to screen the 50 exons of ABCA4. Linkage analysis and haplotype analysis were previously performed

      ClinVar: 99073

      CAID: CA226919

      SupplementalData: n/a

    1. JB260 Stargardt ABCA4 c.6119G>A p.Arg2040Gln rs148460146 Zernant et al (2014)50 c.2879del p.Ala960Aspfs*17 N/A

      Case#: Bryant Subject JB260, US

      DiseaseAssertion: Stargardt

      FamilyInfo:

      CasePresentingHPOs: "Stargardt disease is a childhood-onset macular degeneration and is most commonly caused by mutations in ABCA4. Characteristic yellow flecks are typically seen under the macula during a fundus exam."

      CaseHPOFreeText:

      CaseNotHPOs:

      CaseNotHPOFreeText:

      GenotypingMethod: WES; previously screened using arrayed primer extension (APEX) multigene panels for the relevant disease and no disease-causing variants had been identified; PCR and Sanger for verification

      PreviouslyPublished: n/a

      Variant: c.6119G>A p.Arg2040Gln; c.2879del p.Ala960Aspfs*17

      CAID: CA232815

      SupplementalData:

    1. See Supplementary Table S2 for a complete genotypic glossary of the cohort.

      Case#: Patients were identified from the inherited retinal disease (IRD) database at UC San Diego (UCSD).

      DiseaseAssertion: RP with macular edema

      FamilyInfo:

      CasePresentingHPOs:

      CaseHPOFreeText: Dx of RP based on "a history of progressive peripheral vision loss or nyctalopia, and ocular examination findings of RP including bone spicule pigmentation, disc pallor and attenuated vessels and genetic confirmation."

      CaseNotHPOs:

      CaseNotHPOFreeText:

      GenotypingMethod: Next-generation sequencing (NGS), exome sequencing, and/or targeted Sanger sequencing were the primary genetic testing approaches.

      PreviouslyPublished: PMID:10206579 is referenced but it seems a reference to the variant and not the proband

      Variant: c.6383A>G (p.His2128Arg); c.3G>T (p.Met1?). phase unknown

      ClinVar: 99455

      CAID: CA227399

      SupplementalData: Variant is found in table S2

  3. May 2026
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