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    1. Patient 6 (P6)

      Case#: Patient 6 (P6) is an 18-year-old Chinese male.

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

      FamilyInfo: Patient denied family history of inborn error of immunodeficiency. The patient's father harbors the same CTLA4 variant as the patient. No symptoms are reported in the patient's father.

      CasePresentingHPOs: HP:0001954 (Recurrent fever), HP:0012735 (Cough), HP:0002829 (Arthralgia), HP:0002113 (Pulmonary infiltrates), HP:0002716 (Lymphadenopathy), HP:0006532 (Recurrent pneumonia), HP:0004313 (Decreased circulating immunoglobulin concentration

      CaseHPOFreeText: MRI of knees showed patchy abnormal signals in the right femoral and lateral condylar regions suggestive of bone marrow edema, with surrounding soft tissue edema. Mild joint effusion and suprapatellar bursa fluid were also noted. Treatment with avatacept was started and at the six-month follow-up the patient reported clinical improvement. He had no fever or sputum production and symptoms of lymphadenopathy and joint pain had improved.

      CaseNotHPOs: HP:0001386 (Joint swelling), HP:0000988 (Skin rash), HP:0002014 (Diarrhea), HP:0003493 (Antinuclear antibody positivity), HP:0034092 (Anti-cyclic citrullinated peptide antibody positivity), HP:0002923 (Rheumatoid factor positive), HP:0032230 (Cytoplasmic antineutrophil antibody positivity)

      CaseNotHPOFreeText:

      CasePreviousTesting: None noted.

      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.436G>A(p.Gly146Arg) variant.

      ClinVar: 849622

      gnomAD: This variant has an allele frequency of 0.000001696 in gnomAD v4.1.1. (https://gnomad.broadinstitute.org/variant/chr2-203870912-G-A?dataset=gnomad_r4)

      SupplementalData: There is no supplemental data.

    2. Patient 1 (P1)

      Case#: Patient 1 (P1) is a 24-year-old Chinese female.

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

      FamilyInfo: The patient's father carries the same CTLA4 variant as the patient but has been asymptomatic. No other family history reported.

      CasePresentingHPOs: HP:0031245 (Productive cough), HP:0002105 (Hemoptysis), HP:0001878 (Hemolytic anemia), HP:0006532 (Recurrent pneumonia), HP:0004313 (Decreased circulating immunoglobulin concentration, HP:0033608 (Pulmonary nodule), HP:0002716 (Lymphadenopathy), HP:0001596 (Alpecia),

      CaseHPOFreeText: Patient first presented at age 14 with respiratory symptoms. She was hospitalized at age 16 with hemolytic anemia and recurrent pulmonary infections. Lab work showed hypogammaglobinemia. Chest CT showed scattered solid and ground-glass density nodules bilaterally in the lungs, Lung biopsy demonstrated lymphocytic infiltration and siderophages. Treatment with corticosteroids achieved temporary remission, but the patient relapsed with dose tapering. She developed Evans syndrome, alopecia, and skin lesions. Disease stabilized with weekly subcutaneous abatacept (125mg) and the interval was subsequently extended to once every 4 weeks.

      CaseNotHPOs: HP:0003493 (Antinuclear antibody positivity), HP:0032230 (Cytoplasmic antineutrophil antibody positivity).

      GenotypingMethod: Genotyping was performed by 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.155G>T(p.Gly52Val) variant.

      ClinVar: 1420586

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

      SupplementalData: No supplemental data provided.

    3. Patient 4 (P4)

      Case#: Patient 4 (P4) is a 60-year-old Chinese woman.

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

      FamilyInfo: Patient's daughter is Patient 3 and harbors the same CTLA4 variant.

      CasePresentingHPOs: HP:0001954 (Recurrent fever) HP:0011110 (Recurent tonsillitis), HP:0000155 (Oral ulcer), HP:0005558 (Chronic leukemia)

      CaseHPOFreeText: Patient's symptoms onset in childhood with recurrent fever and tonsillitis. She experienced recurrent oral ulcers starting around age 50. She was diagnosed with large granular lymphocytic (LGL) leukemia for which she was treated with long-term corticosteroids for three years. She is currently treated with oral cyclosporine.

      CaseNotHPOs: HP:0000988 (Skin rash)

      CaseNotHPOFreeText: Patient denied history of rash, dry mouth, or dry eyes.

      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.

    4. 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. relatives

      Case#: II.3, a 59 year old female, age of onset 58

      DiseaseAssertion: Inflammatory polyarthritis

      FamilyInfo: Table 1

      CaseHPOFreeText: presented with lymphoid proliferation, central nervous system inflammation (transverse myelitis and extensive disseminated encephalomyelitis), epilepsy, chronic kidney disease with one transplantation (benign polyclonal B-cell infiltration, interstitial fibrosis), interstitial pneumopathy, splenomegaly, hepatic abnormality with diffuse nodular hyperplasia, rectocolitis, extensive varicella zoster virus infection (VZV), viral encephalitis without documentation, Epstein–Barr virus (EBV) chronic viremia, Clostridium difficile severe colitis

      Variant: c.379T >G variant in CTLA4

      GenotypingMethod: high-throughput sequencing

      CAID: CA350138665

    2. 18-year-old female patien

      Case#: III.7, an 18-year-old female patient

      DiseaseAssertion: immune thrombopenia, autoimmune hemolytic anemia, and Evans syndrome with infections early-onset herpes zoster and chronic Epstein-Barr virus

      FamilyInfo: Table 1

      CasePresentingHPOs: HP:0001433, HP:0002716

      CaseHPOFreeText: severe necrotic dermohypodermitis of left leg caused by Pseudomonas aeruginosa, hypogammaglobulinemia

      Variant: c.379T >G variant in CTLA4

      GenotypingMethod: high-throughput sequencing

      CAID: CA350138665

    1. We conducted WGS on a 20-year-old Spanish proband (only child), who exhibited classical symptoms of IDAIL, including early-onset type 1 diabetes (diagnosed at 15 months old), severe enteritis, genital vitiligo and atopic dermatitis. Throughout his childhood, he faced recurrent respiratory infections, including pneumonia, alongside pronounced reactive hypereosinophilia, which constituted up to approximately 65% of total peripheral blood mononuclear cells (PBMCs) at times. Notably, at the age 13, he experienced severe diarrhea and ascites, accompanied by eosinophil infiltration in the esophagus, stomach, and bone marrow. Medical investigations revealed a clonal γδ T cell band, characterized as reactive, with subsequent exclusion of FIP1L1-PDGFRA and PDGFRB rearrangements, as well as any abnormal karyotype. Over time, he developed esophageal candidiasis and sepsis due to Salmonella typhi and Clostridium difficile infection, which was accompanied by a gradual development of hypogammaglobulinemia. A complete clinical case description is included in the Supplementary Materials.Bioinformatic analysis revealed a known pathogenic maternally inherited missense variant in CTLA4, c.208C>T p.R70W, confirmed by Sanger sequencing (Fig. 1, A to D). This heterozygous variant has been previously reported to be causative of CTLA4-h with incomplete penetrance (1, 2). The R70W variant was also present in the patient’s mother who had been diagnosed with mild sarcoidosis, dysphagia with eosinophilic infiltrates of esophagus, low IgM, and decreased percentages of memory B cells.

      Case#: 20-year-old Spanish man

      DiseaseAssertion: Immune dysregulation with autoimmunity, immunodeficiency, and lymphoproliferation

      FamilyInfo: Maternally inherited CTLA4 variant and paternally inherited CLEC7A variant. Patient's mother had been diagnosed with mild sarcoidosis, dysphagia with eosinophilic infiltrates of esophagus, low IgM, and decreased percentages of memory B cells.

      CasePresentingHPOs: HP:0100651 (Type I diabetes mellitus) HP:0001045 (Vitiligo) HP:0001047 (Atopic dermatitis) HP:0002205 (Recurrent respiratory infections) HP:0001541 (Ascites) HP:0002014 (Diarrhea) HP:0410151 (Eosinophilic infiltration of the esophagus) HP:0410147 (Eosinophilic infiltration in the stomach mucosa) HP:0033351 (Candida esophagitis) HP:0100806 (Sepsis) HP:0032061 (Hypereosinophilia) HP:0032064 (Gastrointestinal eosinophilia)

      CaseHPOFreeText: Type 1 diabetes was diagnosed at 15 months old. Patient has a history of severe enteritis. Investigations, which were undertaken due to hypereosinophilia and eosinophilic infiltration, revealed a clonal γδ T cell band, characterized as reactive, with subsequent exclusion of FIP1L1-FDGFRA and PDGFRB rearrangements, as well as any abnormal karyotype. Sepsis was due to Salmonella typhi and Clostridium difficile infection.

      Article provides functional evidence of CLEC7A variant affecting phenotype of this patient. Their data suggest that partial loss of DECTIN-1 in a patient with CTLA-4h may enhance IDAIL penetrance and confer additional unique phenotypes, with persistent marked hypereosinophilia as the most remarkable uncommon clinical manifestation.

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: Whole-genome sequencing was performed on the patient's whole blood sample. The variants were confirmed with Sanger sequencing. Presence of a somatic CTLA4 variant was ruled out with high-coverage WGS of sorted peripheral T cells.

      GenotypingMethod: Whole-genome sequencing was performed on the patient's whole blood sample. The variants were confirmed with Sanger sequencing. Presence of a somatic CTLA4 variant was ruled out with high-coverage WGS of sorted peripheral T cells.

      PreviouslyPublished: No

      Variant: NM_005214.5:c.208C>T p.Arg70Trp

      ClinVar: 161114

      CAID: CA173999

      gnomAD: 0.000001313 https://gnomad.broadinstitute.org/variant/2-203870684-C-T?dataset=gnomad_r4

      Variant: NM_197947.3:c.547C>T p.Leu183Phe

      ClinVar: 717363

      CAID: CA6443934

      gnomAD: 0.01719 https://gnomad.broadinstitute.org/variant/12-10123309-G-A?dataset=gnomad_r4

      SupplementalData: Detailed clinical info and and immunological test results can be found in Supplementary Materials.f

    1. This patient was the second daughter of the index case.

      Case#: Grammatikos_2021_Case2, female, 10 months (onset) 25 y.o. (report), origin not reported

      DiseaseAssertion: CTLA4 haploinsufficiency

      FamilyInfo: Mother and brother are also affected. Extensive family history of autoimmune phenotypes in Figure S1.

      CasePresentingHPOs: HP:0002315, HP:000340, HP:0003394, HP:0004313, HP:0012115, HP:0001878, HP:0007565, HP:0001744, HP:0004315, HP:0006577, HP:0002090, HP:0002829, HP:0005263, HP:0006532, HP:0033542, HP:0032174, HP:0002110, HP:0011473 (headache, peripheral paresthesia, muscle cramps, hypogammaglobulinemia, autoimmune hepatitis, hemolytic anaemia, cafe au lait spots, splenomegaly, low IgG, macronodular cirrhosis, fungal pneumonia, arthralgia, antral gastritis, recurrent bacterial pneumonias, bronchial wall thickening, diffuse tree-in-bud infiltrates, bronchiectasis, focal total villous atrophy)

      CaseHPOFreeText: Severe lesion in right cerebellar hemisphere and left superior frontal gyrus. Evan's syndrome, bronchial associated lymphoid hyperplasia, intestinal metaplasia, intraepithelial lymphocytes

      CaseNotHPOs: HP:0001369, HP:0012538 (artritis, response to gluten)

      CaseNotHPOFreeText: n/a

      CasePreviousTesting: 2 benign polymorphisms found in perforin gene. Other genes tested: Fas, Fas ligand, Caspase 10, Caspase 8, NRAS. Heterozygous VUS found in LRBA gene.

      GenotypingMethod: not specified. It says, "Following her mother’s diagnosis of CTLA4 haploinsufficiency, she was confirmed to have the same genetic mutation." Mother was tested using NGS + Sanger

      PreviouslyPublished: not reported

      Variant: NM_005214.4(CTLA4):c.81_82insT (p.Leu28fs) heterozygous

      ClinVarID: 644629

      CAID: CA645516071

      gnomAD: not found

      SupplementalData: Figure S1 shows extensive family history

    1. Case#: Angulo_2014_P8, M, 6 months (onset), origin in Slovenia

      DiseaseAssertion: APDS

      FamilyInfo: de novo confirmed

      CasePresentingHPOs: HP:0002783, HP:0410018, HP:0002716, HP:0002014, HP:0032247, HP:0031693, HP:0001433, HP:0000620, HP:0030877, HP:0002720, HP:0003496, HP:0410303, HP:0032218, HP:0010976, HP:0030374, HP:0030388, HP:0030381 (recurrent LRTI, recurrent ear infections, massive generalized lymphadenopathy, cryptosporidium parvum diarrhoea, CMV and EBV infections, hepatosplenomegaly, chronic dacriocystitis requiring surgical intervention, mixed obstructive/restrictive FEV1/FVC, decreased IgA, increased IgM, decreased haemophilus B antibodies, decreased CD4+ T cells, decreased B cells, decreased IgM memory B cells; CD19+ CD27+ IgD+, decreased Class-switched memory B cells; CD19+ CD27+ IgD–, as % of CD19+, increased transitional B cells; CD19+ CD38+ IgM+, as % of CD19+

      CaseHPOFreeText: decreased CD25+ as % CD3+, mastocytoma, increased CD8+ T cells, CD4+ CD25– CD127– as % of CD4+ T cells, increased CD8+ CD25– CD127– as % of CD8 T cells, as % of CD19+)

      CaseNotHPOs:

      CaseNotHPOFreeText: malignancy, abnormal CD4+ CD25+ CD127- as % of CD4+ regulatory T cells

      CasePreviousTesting: fibroblast and blood samples taken to evaluate somaticism. Findings indicate the mutation was germline.

      GenotypingMethod: WES and Sanger, followed by genome for parental confirmation.

      PreviouslyPublished: not reported

      Variant: heterozygous NM_005026.5:c.3061G>A (p.E1021K)

      ClinVarID: 88675

      CAID: CA145460

      gnomAD: Not present in gnomAD

      SupplementalData: Phenotypic info in table S2

      Note: could lacrimal gland obstruction be considered atopy for phenotype scoring?

    2. Case#: Angulo_2014_P5, M, 12 months old (onset), origin in England

      DiseaseAssertion: APDS

      FamilyInfo: Pedigree in figure 1. Affected sister, son, and niece

      CasePresentingHPOs: HP:0002783, HP:0410018, HP:0003496, HP:0005403, HP:0032218, HP:0005415, HP:0010976, HP:0020112, HP:0000365, HP:0002878, HP:0033537, HP:0011950, HP:0001744, HP:0025289, HP:0030387, HP:0030381, HP:0030877 (recurrent lower respiratory tract infection, recurrent ear infection, elevated IgM, decreased T cells, decreased CD4+ T cells, decreased CD8+ T cells, decreased B cells, Increased proportion of CD4+CD25+ regulatory T cells, hearing impairment, type 2 respiratory failure, mosaic attenuation, inflammatory bronchiolitis, splenomegaly, cervical lymphadenopathy, increased class switched memory B cells, increased transitional B cells, mixed obstructive/restrictive FEV1/FVC,

      CaseHPOFreeText: increased CD25+ as a percentage of CD3+, increased CD3+CD56+ as % of CD3+, increased proportion of CD4+ CD25+ CD127– CD45RA- regulatory T cells, increased proportion of CD8+ CD25+ CD127– CD45RA+ regulatory T cells, increased CD4+ CD25- CD127– CD45RA- as % of CD4+ peripherally expanded T cells, increased CD8+ CD25- CD127– CD45RA+ as % of CD8+ peripherally expanded t cells, severe necrotising pneumonia, hypoperfused right lung, recurrent salivar gland abscesses, CD

      CaseNotHPOs: HP:0410242, HP:0410240 (abnormal IgG, abnormal IgA)

      CaseNotHPOFreeText: malignancy

      CasePreviousTesting:

      GenotypingMethod: WES and Sanger

      PreviouslyPublished: not reported

      Variant: heterozygous NM_005026.5:c.3061G>A (p.E1021K)

      ClinVarID: 88675

      CAID: CA145460

      gnomAD: Not present in gnomAD

      SupplementalData: Phenotypic info in table S2

    1. c.494G>A

      Case#: U.II.1, subject 50. Male. Age of Onset: 3.75 y.o. Age of evaluation: 9 y.o. Origin in Japan, Asian

      DiseaseAssertion: Diagnosis with CVID (later with CTLA4 insufficiency)

      FamilyInfo: Patient is oldest of three siblings. All three have been genotyped, but only this proband is affected. Variant inherited from the father, who is also unaffected (pedigree in Figure 1).

      CasePresentingHPOs: HP:0001873, HP:0001973, HP:0004313, HP:0002720, HP:0004315, HP:0002719, HP:0005353

      CaseHPOFreeText: Cytopenia, Autoimmune cytopenia, hypogammaglobulinemia, low IgG, low IgA, Clinically reactivated/apparent Infections, Herpes Infection, clinical EBV infection (possibly chronic?), ITP, positive Coombs test

      CaseNotHPOs: large phenotype table with unreported symptoms in table S1

      CaseNotHPOFreeText: Patient was checked for a number of additional phenotypes but none were identified. Please see Supplementary table S1 for details.

      CasePreviousTesting: Genome-wide methods were not used (sequencing of CTLA4 was performed, but no reference made to other genes tested). Some families received whole-exome sequencing but we are unsure if this patient was included.

      GenotypingMethod: The authors imply that they sequenced the four exons of CTLA4.

      PreviouslyPublished: Unpublished

      Variant: NM_005214.5(CTLA4):c.494G>A (p.W165*)

      ClinVarID: N/A

      CAID: CA350138939

      gnomAD: This variant is not found in gnomAD v2.1.1.

      SupplementalData: Extensive data in S1, including some phenotypes that were tested for but found to be absent.

      Note: Not functionally tested using transendocytosis.

    1. 20-year-old male

      Case#: 20-year-old male, Race: White (ancestry unavailable) DiseaseAssertion: The patient is asserted to have "CTLA4 haploinsufficiency" manifesting as aplastic anemia. FamilyInfo: Patient's father has disease variant Case PresentingHPOs: HP:0012378 (Fatigue), HP:0001962 (Palpitations), HP:0002875 (Exertional dyspnea), HP:0001903 (Anemia), HP:0001873 (Thrombocytopenia), HP:0002608 (Celiac disease), HP:0000608 (Macular degeneration), HP:0001876 (pancytopenia), HP:0001915 (aplastic anemia), CaseHPOFreeText: ** Diagnosis at age 20 when patient presented with persistent and profound incapacitating fatigue. Bone marrow biopsy was consistent to aplastic anemia. Table 1 summarizes presenting labs and flow cytometry results. Patient was first treated with high-dose IVIG, cyclosporine, and systemic corticosteroids. He initially responded well, but 6 months into therapy he developed renal impairment and was transitioned to sirolimus. His aplastic anemia relapsed. Patient underwent haploidentical (sibling, variant negative) hematopoietic stem cell transplantation, which was curative. CaseNotHPOs: HP:4000129 (Recent blood transfusion), CaseNotHPOFreeText: N/A CasePreviousTesting: The following studies were negative: Bone marrow chromosome analysis; FISH hybridization for BCR/ABL1, monosomy 5, monosomy 7, trisomy 8, and 20q deletion; myelodysplastic syndrome mutation sequencing. GenotypingMethod: A primary immunodeficiency NGS panel was run (gene content not specified) and identified a paternally inherited heterozygous missense variant in CTLA4. Variant: The patient is heterozygous for the NM_005214.5(CTLA4):c.385T>A (p.Cys129Ser). ClinVar: 1414930 CAID: N/A gnomAD**: This variant was not found in gnomAD v.4.1.0

    1. Patient 1

      Case#: Collen_2022_Patient_1, female, infancy (onset) 23 y.o. (report), Ethnicity reported: white

      DiseaseAssertion: CTLA4 haploinsifficiency

      FamilyInfo: Mutation inherited from father, who had melanoma and was asymptomatic for autoimmunity. Paternal first cousin had type-1 diabetes. Mother and brother had no autoimmune symptoms to report.

      CasePresentingHPOs: HP:0002014, HP:0001510, HP:0002608, HP:0003261, HP:0033637, HP:0011473, HP:0002900, HP:0001903, HP:0001944, HP:0002246, HP:0001973, HP:0000872, HP:0008207, HP:0003765, HP:0004315, HP:0410240, HP:0030374 (diarrhea, low growth, celiac disease, elevated TTG IgA, endomyosial antibody, absence of duodenal villi, secondary hypokalemia, anemia, dehydration, scalloping of duodenal folds, cytopenias, hashimoto thyroiditis, Addison disease, psoriasis, low IgG, low IgA, low memory B cells)

      CaseHPOFreeText: possible lichen sclerosis, negative titers to varicella-zoster virus and mumps despite vaccination. Patient showed switched memory B cells 1.4%, unswitched memory B cells 4.9%, and intraepithelial lymphocytes. Additional diagnosis's: Celiac disease, Hashimoto thyroiditis, Addison disease, CVID

      CaseNotHPOs: HP:0002718 (recurrent bacterial infections)

      CaseNotHPOFreeText: abnormal stool culture

      CasePreviousTesting: none

      GenotypingMethod: Whole exome sequencing (research based)

      PreviouslyPublished: not reported

      Variant: NM_005214.5:c.457+2T>C

      ClinVarID: not found

      CAID: CA350138849

      gnomAD: not found

      SupplementalData: n/a

      Note: Functional information present. Immunophenotyping using flow cytometery revealed diminished expression of CTLA4 on CD4+/Foxp3+/CD45RA− memory regulatory T cells (Tregs) (Figure 3A).

    1. We

      Case#: Case 1, male, Brazilian

      DiseaseAssertion: APDS1

      FamilyInfo: We identified a kinship that included 3 half-siblings with symptoms typical for APDS1. The patient's father (I.4), a truck driver, reported that in addition to the index case, he had 4 additional children with 3 other women living in different Brazilian cities along his truck route and that 2 of these children (II.4 and II.5) had symptoms similar to the index case (Fig 1A). Of his 5 children, 1 had died at 3 years of age (II.1) with clinical symptoms similar to the index case, including hepatosplenomegaly, fever, and recurrent infections; immunologic studies were not performed. The other symptomatic half-brother (II.5) was evaluated at 5 years of age with a history of 5 episodes of pneumonia, recurrent oral candidiasis, several upper respiratory infections, and hepatosplenomegaly. The pedigree suggested that the father (I.4) carried the same autosomal-dominant PIK3CD mutation that affected 3 sons born to different mothers. However, neither he nor the mothers of the affected boys had any symptoms suggestive of APDS. Sanger sequencing demonstrated that neither the father nor the mothers of the affected boys carried the identified PIK3CD mutation in blood. This raised the possibility of germline or gonadal mosaicism in the father. To test this hypothesis, genomic DNA was extracted from his semen. As illustrated in Figure 1F, semen-derived DNA carried the heterozygous p.E1021K mutation identified in the affected sons. Based on relative peak heights, we estimated that 20% to 25% of the semen carried the mutation.

      CaseHPOFreeText: The index case (II.4 in Fig 1A) had 10 episodes of pneumonia, 2 episodes of sepsis, several upper respiratory infections, and oral moniliasis within the first year of life. He subsequently developed hepatosplenomegaly, lymphadenopathy, and an axillary abscess owing to Candida albicans. At 3 years of age, laboratory investigation showed increased immunoglobulin (Ig) M (368 mg/dL) and IgG (1,450 mg/dL) levels, normal IgA level (107 mg/dL), low CD4 (330/mm3) and increased CD8 (1,229/mm3) counts, and low CD19 B cells (17/mm3). IgG subclasses showed normal absolute levels of IgG1 (1,020 mg/dL), IgG2 (79.0 mg/dL), IgG3 (78.3 mg/dL), and IgG4 (28.1 mg/dL); however, their ratio showed a proportional decrease of IgG2.

      GenotypingMethod: Sanger sequencing. Unclear if entire PIK3CD gene was sequenced across intron/exon boundaries.

      Variant: a heterozygous PIK3CD hotspot mutation (c.3061G→A, p.E1021K) was identified by Sanger sequencing.

      CAID: CA145460

      gnomAD: absent from gnomAD v2.1.1

    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. 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

    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

    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. 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. 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

  2. Feb 2026
    1. Segregation analysis in the family revealed that her father (I:2) carried the c.4685 T > C variant, but the proband’s affected sister (II:4) did not, indicating that this ABCA4 variant was not relevant to the macular dystrophy in this family
  3. Jun 2025
    1. Figure 1. Open in a new tab Pedigree of the family with HAE. Circles indicate females, squares indicate males, black-filled symbols indicate affected individuals, the arrow indicates the index patient, and a slash indicates a deceased individual.

      Case#: 34 year-old Chinese male.

      DiseaseAssertion: HAE-C1INH Type 1.

      FamilyInfo: Family history of edema (mother passed away due to laryngeal edema, older sister experienced buttock swelling after prolonged sitting, maternal uncle experienced episodic abdominal pain and unilateral upper-limb swelling). Family testing for serum C4 and C1INH concentration and C1INH functional activity indicate that proband’s maternal uncle and asymptomatic daughter exhibit low values for all three of these biochemical markers, consistent with Type 1 HAE. The proband’s daughter and maternal uncle also tested positive for the variant identified in the proband. Pedigree included in figures.

      ParentalTesting: Mother passed away before study. Father tested for C4 and C1INH concentration and C1INH function with all values falling in normal ranges.

      CasePresentingHPOs: Edema (HP:0000969), Edema of the dorsum of hands (HP:0007514), Edema of the upper limbs (HP:0010742), Non-pitting edema (HP:6000507), Abdominal pain (HP:0002027)

      CasePhenotypeFreeText: Onset at approximate age of 26. Episodes of localized edema of limbs, skin, and buttocks lasting two to three days regardless of treatment. Episodes became more frequent at age 34 and were accompanied by abdominal pain triggered by fatigue. Non-pitting edema of right hand observed on physical examination.. The proband’s C4 level was 0.02 g/L (reference range: 0.1–0.4 g/L), C1INH concentration was 0.07 g/L (reference range: 0.21–0.39 g/L), and C1INH functional activity was 4.3% (reference range: ≥68.0%).

      CaseNotHPOs: N/A

      CaseNotPhenotypeFreeText: N/A

      CasePreviousTesting: N/A

      GenotypingMethod: PCR amplification with Sanger sequencing.

      Variant: NM_000062:c.1067T>A p.(Val356Glu)

      LegacyVariant: N/A

      ClinVar: N/A

      CAID: CA380702482

      gnomAD: N/A

      MultipleGeneVariants: N/A

      PreviouslyPublished: N/A

      AdditionalInfo: N/A

  4. May 2022
    1. DICER1 syndrome is a rare genetic disorder that predisposes individuals to multiple cancer types.

      GeneName: DICER1 PMID: 29762508 HGNCID: N/A Inheritance Pattern: Autosomal dominant Disease Entity: Cancer Mutation: Germline Zygosity: Heterozygosity Variant: Unregistered Family Information: 12% of children with pleuropulmonary blastomas have cystic nephromas Case: 11 year old patient with Hodgkin lymphoma with DICER1 mutation in 2016.

    1. DICER1 gene is located on chromosome 14q32.13 and plays a crucial role in the control of protein translation; its product, dicer protein, is a ribonuclease (RNase) III endoribonuclease which is essential for the production of microRNAs (miRNA) which are formed by the cleavage of pre-miRNA or double-stranded RNA1–4. RNase III contains two domains, IIIa and IIIb which cleave 3p miRNA and 5p miRNA from the 3′ and 5′ pre-miRNA, respectively. These cleavages require magnesium ions at the interface between the IIIa and IIIb domains and the miRNA; this magnesium dependent catalytic processing occurs at specific residues, E1320, E1564, E1813 and D17092–4. miRNA has a pivotal role in regulating the expression of over 30% of protein-coding genes by its interaction with mRNA5. Given the impact of DICER1 in post-translational events, it is not entirely surprising that functional DICER1 is essential for vertebrate development as evidenced by developmental arrest and death of the embryo when both alleles are lost6,7. Conceptually, DICER1 can be regarded as either a tumor suppressor gene due to loss-of-function mutations or an oncogene due to gain-of-function mutations; it is thought to function as a haploinsufficient tumor suppressor gene with the loss of one allele leading to tumor progression but loss of both alleles having an inhibitory effect for tumor development implying that one intact allele is needed for cell survival8.A study led by one of the authors (DAH) identified germline loss-of-function DICER1 mutations affecting the RNase IIIb domain in affected families with pleuropulmonary blastoma (PPB)9, a rare dysembryonic lung malignancy of childhood which was not the only manifestation of this familial tumor predisposition syndrome; germline and somatic DICER1 mutations were subsequently identified in several other familial associated tumors in several extrapulmonary sites (Table 1). Individuals with germline DICER1 mutations also had non-neoplastic conditions including macrocephaly, renal structural anomalies, retinal abnormalities, dental perturbations, and the GLOW syndrome (global developmental delay, lung cysts, overgrowth and Wilms tumor). These associations encircle the DICER1 tumor predisposition syndrome (Online Mendelian Inheritance in Man numbers 606241, 601200 and 138800), with the estimation that 90% of those affected by this syndrome inherited a germline mutation from one of their parents, with a pattern of autosomal dominant inheritance10.
      • Gene Name: DICER1 Syndrome (OMIM 606241, 601200)
      • PMID: 34599283
      • Hugo Gene Nomenclature Committee (HGNCID): N/A
      • Inheritance Pattern: Autosomal Dominant
      • Disease Entity: pleuropulmonary blastoma (PPB), Sertoli-Leydig cell tumor, gynandroblastoma, embryonal rhabdomyosarcomas of the cervix and other sites, multinodular goiter, differentiated and poorly differentiated thyroid carcinoma, cervical-thyroid teratoma, cystic nephroma-anaplastic sarcoma of kidney, nasal chondromesenchymal hamartoma, intestinal juvenile-like hamartomatous polyp, ciliary body medulloepithelioma, pituitary blastoma, pineoblastoma, primary central nervous system sarcoma, embryonal tumor with multilayered rosettes-like cerebellar tumor, PPB-like peritoneal sarcoma, DICER1-associated presacral malignant teratoid neoplasm and other non-neoplastic associations.
      • Mutation: Germline
      • Zygosity: Heterozygous
      • Variant: has multiple variants associated with it
      • Family Information: Germ cell tumors have been reported in family members
      • Case: identified affected families w/ pleuropulmonary blastoma (PPB): germline and somatic DICER1 mutations also identified in other familial associated tumors
      • CasePreviousTesting: numerous studies confirmed relationship b/t DICER1 variants in carriers and development of range neoplasms and non-neoplastic conditions
    1. DICER1 variants cause a hereditary cancer predisposition

      -Gene: DICER1 -PMID: 29343557 -Inheritance Pattern: DICER1 is inherited as an autosomal dominant condition with decreased penetrance -Disease Entity: earlier onset disease, multisite disease, 0-2 site disease, cystic lung disease, familial disease, bilateral disease, stage IA/IB, bilateral disease -mutation: germline loss-of-function mutation, missense mutation, Intronic mutations, hotspot mutation, second somatic mutation, truncating mutations, biallelic mutation -zygosity: heterozygosity -Family History: -testing should be considered for those with a family history of DICER1-associated conditions so that appropriate surveillance can be undertaken. -Individuals at 50% risk of a germline pathogenic variant based on family history who do not pursue genetic testing should follow surveillance guidelines as -if they have a DICER1 mutation unless/until genetic testing confirms that they did not inherit the familial mutation When a pulmonary cyst is identified in a young child with a pathogenic germline -DICER1 variant or family history of a DICER1-associated condition, it should be assumed to be Type I PPB until proven otherwise

      Other Information: -Case: Risk for most DICER1-associated neoplasms is highest in early childhood and decreases in adulthood -affected phenotype may simply result from probabilities of generating the characteristic “loss-of-function plus hotspot” two hit typical of a DICER1 syndrome neoplasm. -Caseprevioustesting: presymptomatic testing of a minor child, should be discussed and factored into the decision process, as some individuals may choose, and have the right to choose, not to know their/their child’s genetic status. -gnomAD: n/a

  5. Apr 2022
  6. Mar 2021
    1. affected boy (IV-1; 11 years)

      Case#: IV-1, male, 11 y.o, Pakistani

      DiseaseAssertion: Limb-girdle muscular dystrophy (LGMD2F), sarcoglycanopathy

      FamilyInfo: Consanguineous parents, both described as healthy and showing no abnormality. Three unaffected siblings were also reported: IV-2 (male, 10 y.o), IV-4 (male, 7 y.o), and IV-5 (female, 1.5 y.o). A deceased sister is included on the pedigree, but no details about this individual were reported. See Figure 1.

      CasePresentingHPOs: HP:0001288, HP:0002650, HP:0003547, HP:0003749, HP:0001655

      CaseHPOFreeText: Reduced weight gain noted at 3-4 y.o. Mild cardiac hypertrophy observed on cardiac review (additional echocardiography results reported in "Echocardiography" section). Additional phenotypic information reported in Supplementary Table 1.

      CaseNotHPOs: HP:0009077, HP:0000703, HP:0001382, HP:0000365, HP:0001510, HP:0001249, HP:0000478, HP:0030148, HP:0011675

      CaseNotHPOFreeText: Extensor muscles of the wrist, toes flexors, and hip abductors noted to be relatively normal. Additional phenotypic information reported in Supplementary Table 1.

      MotorAchievement: Sat without assistance at 8 months of age, walked at 15 months of age, ran at 1.5 months of age. Never jumped or hopped. Frequent falls noted, as well as difficulty in walking and climbing stairs since 3 y.o.

      CreatineKinase: 18SU (normal: 20SU for children, 10SU for adults) (see Supplementary Table 1). No assertion was made by the authors regarding whether this represents a normal or decreased CK level.

      PreviousTesting: Thyroid stimulating hormone: 2.3mU/L (normal: <0.6mU/L); Serum VZV IgG: 286mlU/ml (normal: >150mlU/ml); IGF-1:186 ng/μl (normal: 102-520 ng/μl for males, 14 y.o); PRL: 202 ng/dl (normal: 42.5-414 ng/dl for males); Vitamin D: 47nmol/L (normal: 25-50 nmol/L); Free T4: 17.0 pmol/L (normal:10.8-19.0 pmol/L) (see Supplementary Table 1)

      GenotypingMethod: (1) Targeted next generation sequencing of 31 genes associated with LGMD from proband genomic DNA extracted from peripheral blood sample; (2) Sanger sequencing of genomic DNA extracted from peripheral blood samples to confirm SGCD variant of interest in proband and three family members (III-3, III-4, IV-4). Variant was identified in homozygosity in the proband, in heterozygosity in each of the parents, and was not present in the unaffected sibling (IV-4).

      Variant: NM_000337.5:c.289C>T (p.Arg97Ter)

      CAID: CA3530549

      gnomAD: Not reported

  7. Jan 2021
    1. AJV

      CaseAJV: 17 years diagnosis, Australia

      DiseaseAssertion: Hypertrophic Cardiomyopathy

      FamilyInfo: Father (index case) died awaiting cardiac transplant (carried both variants). Two possibly affected relatives.

      CasePresentingHPOs: HP:0001639, HP:0006536

      (Hypertrophic cardiomyopathy, Obstructive lung disease)

      HPOsFreeText: Maximum left ventricular hypertrophy at 17 mm, Sudden cardiac death event at 17 years, Maximal wall thickness at 22mm,

      CaseNotHPOs: N/A

      NotHPOsFreeText: N/A

      CasePreviousTesting: See Table 1

      CaseGenotypingMethod: DNA was isolated from peripheral blood. Most participants underwent testing from the Illumina Cardiomyopathy Sequencing Panel, which includes 46 cardiomyopathy related genes. For others, whole exome sequencing or Sanger squencing was used. After the results were returned, variants were filtered for pathogenicity and rarity.

      Variant:NM_000257.3:c.1954A>G (p.Arg652Gly)

      ClinVarID:177626 https://www.ncbi.nlm.nih.gov/clinvar/variation/177626/

      gnomAD: Not in gnomAD

      Multiple Gene Variants:

      MYBPC3 Variant

      Variant: NM_000256.3:c.2980C>T (p.Leu994Phe)

      ClinVarID:180992 https://www.ncbi.nlm.nih.gov/clinvar/variation/180992/

      gnomAD: European (Non-Finnish) 1.624e-4, Overall 8.461e-5 https://gnomad.broadinstitute.org/variant/11-47355487-G-A