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    1. young girl

      Case#: Girl II.2 from family DCM84. Diagnosed in her third week of life. Ancestry NR.

      DiseaseAssertion: Dilated cardiomyopathy with left ventricular noncompaction.

      FamilyInfo: No known heart disease in her parents or older sister. None of them had the variant. See Figure 2.

      ParentalTesting: Both parents tested negative by Sanger sequencing. They declined parentage testing. The authors think the variant likely arose de novo.

      CasePresentingHPOs: HP:0001644, HP:0030682, HP:0025169, HP:0001635, HP:0001653, HP:0000980, HP:0001265, HP:0001252, HP:0000961, HP:0002094, HP:0001508

      CaseHPOFreeText: She was pale and had trouble breathing. She also had cyanosis and low muscle tone. Her reflexes were reduced. Her first echo showed that both ventricles were enlarged. Her left ventricular ejection fraction was 20%. A later echo showed mitral regurgitation. She had trouble gaining weight. She died from heart failure at 3 years and 8 months.

      CaseNotHPOs: NR

      CaseNotHPOFreeText: NR

      CasePreviousTesting: NR

      Genotyping Method: Whole exome sequencing found the variant. Sanger sequencing was used to test her family.

      FunctionalAnalysis: K30E made tropomyosin less stable. The thin filaments with K30E moved more slowly in the lab test. See Figures 3 through 5 and Tables 1 and 3.

      Variant: NM_001018005.2(TPM1):c.88A>G (p.Lys30Glu). Heterozygous.

      ClinVar: 3250489

      CAID: NR

      gnomAD: No record found in gnomAD v4.1.

      AdditionalInfo: PMID 39684770. The variant was first called a VUS. After the lab tests the authors proposed that it was pathogenic. Supplementary Table S1 shows how her echo results changed over time.

    1. Genetic analysis showed that there were 13 families in the partial deletion group

      GroupID: None

      DiseaseAssertion: VHL

      GroupSize: 35

      GroupNumberMales: 23

      GroupNumberFemales: 12

      GroupEthnicity: Chinese

      GroupAgeRange: N/A

      GroupInfo: 13 families (35 patients total, 33 of which are alive) in the partial deletion group had a CNS hemangioblastoma (see table 1)

      GroupPresentingHPOs: HP:0010797 (Hemangioblastoma

      GroupHPOFreeText: N/A

      GroupNotHPOs: N/A

      GroupNotHPOFreeText: N/A

      GroupPreviousTesting: N/A

      PreviouslyPublished: 32432044 (Potential overlap, same authors)

      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. PMID: 21461997

      PatientID: 1

      KindredID: 1

      Case: M, 19Y6M, Ethnicity Unknown

      DiseaseAssertion: assumed VHL

      FamilyInfo: The mother of the patient was negative for the VHL mutation; the father was not tested. The family history was negative for VHL syndrome and PCCs

      CasePresentingHPOs: HP:0006748; HP:0009711 (adrenal pheochromocytoma, retinal capillary hemangioma)

      CaseHPOFreeText: scans at 13Y revealed bilateral adrenal masses (left, 4 cm×3.5 cm×5 cm; right, 5 cm×4 cm×4.5 cm) and retinal capillary hemangioma. A bilateral resection of the adrenal glands was performed and histological examination of the tissues confirmed pheochromocytoma.

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: asymptomatic at 13Y but went to hospital for hypertension. The patient remains in complete remission (CR) 79 months after diagnosis.

      CasePreviousTesting: SDHB, SDHC, SDHC, RET,

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: p.H125P (c.374A>C)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: 223201 https://www.ncbi.nlm.nih.gov/clinvar/variation/223201/

      CAID: N/A

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: missense_variant;transversion

      CivicName: H125P (c.374A>C)

      MultipleGeneVariants: N/A

    1. Von Hippel-Lindau (VHL) syndrome is an autosomal dominant genetic disorder caused by germline mutation of the VHL gene. It is associated with multiple neoplasias including hemangioblastoma, clear cell renal cell carcinoma, pheochromocytoma, and neuroendocrine tumors. Ovarian tumors are extremely rare in this syndrome. We describe the case of a 16-yr-old girl with a previous diagnosis of bilateral pheochromocytoma and several pancreatic neuroendocrine tumors in VHL syndrome context. Follow-up abdominal-pelvic magnetic resonance imaging revealed a 33 mm, well-circumscribed nodule in the right ovary. The patient was submitted to laparoscopic right salpingo-oophorectomy. Microscopically, the tumor consisted of polygonal cells with abundant microvacuolized clear cytoplasm arranged in a solid pattern. The neoplastic cells were immunohistochemically positive for inhibin and calretinin. A diagnosis of ovarian steroid cell tumor was made. Only 4 cases with this association have been reported to date. Of the previously described cases, only one concerns a child; the others were all adult women. All of them had a previous diagnosis of VHL syndrome and presented with secondary amenorrhea and/or hirsutism due to testosterone-secreting ovarian steroid cell tumors. Although extremely rare, the association between VHL syndrome and ovarian steroid cell tumor has been reported, and our case suggests there is a link between the 2 entities.

      PatientID: 1

      KindredID: 1

      Case: F, 17Y0M, Ethnicity Unknown

      DiseaseAssertion: assumed VHL

      FamilyInfo: N/A - no family history of VHL disease. Authors indicate probably a de novo mutation, however no testing on family members was completed.

      CasePresentingHPOs: HP:0006748; HP:0030405; HP:0100615 (pheochromocytoma, pancreatic endocrine tumor, ovarian neoplasm)

      CaseHPOFreeText: hospitalized in 2011 (11Y old) due to a hypertensive crisis with end-organ damage (bilateral papilledema and left ventricular hypertrophy). MRI showed 2 heterogenous nodular lesions where the largest was in the right adrenal gland (65x51x39mm) and the other in the left adrenal gland (36x28x25mm). A bilateral adrenalectomy diagnosed both tumors as pheochromocytomas of the adrenal gland. Lymph node metastasis was detected in the adipose tissue surrounding the left adrenal gland. 2 years later (at age 13Y) a PET/CT scan showed a nodular lesion in the tail of the pancreas (11mm) and a nodule in between the inferior vena cava and the portal vein (13mm) and both were later diagnosed as neuroendocrine tumors the former in the pancreas and the latter in the perihaptic ectopic pancreatic tissue. At 14Y, more pancreatic lesions were found. At 16Y, an MRI found a nodule int he right ovary (33mm) which was later diagnosed as a benign ovarian steroid cell tumor

      CaseNotHPOs: HP:0010797; HP:0006770 (hemangioblastoma, clear cell renal cell carcinoma)

      CaseNotHPOFreeText: Table 1 indicates this was did not have the above manifestations

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: p.R161Q (c.482G>A)

      LegacyVariant: p.R161Q (c.695G>A)

      CaseProblemVariantFreeText: N/A

      ClinVarID: 182983, https://www.ncbi.nlm.nih.gov/clinvar/variation/182983/

      CAID: N/A

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: missense_variant;transition

      CivicName: R161Q (c.482G>A)

      MultipleGeneVariants: N/A

    1. PatientID: 33

      KindredID: 33

      Case: M, 33Y0M, Korean

      DiseaseAssertion: VHL

      FamilyInfo: No family history of VHL.

      CohortInfo: 26 Korean patients with more than one HAB in the CNS or eye, a single HAB in the CNS or retina plus a visceral manifestation (multiple renal, pancreatic or hepatic cysts, pheochromocytoma and RCC) and positive family history plus any one of the above manifestations.

      CasePresentingHPOs: HP:0010797; HP:0005584 (Hemangioblastoma, Renal cell carcinoma)

      CaseHPOFreeText: Multiple or bilateral CNS hemangioblastomas and renal cell carcinoma. Other phenotypes presented but not specified (one or more of: pancreatic cyst or tumor, renal or hepatic cyst). Diagnosed with VHL Type 1.

      CaseNotHPOs: HP:0002666; HP:0009711 (Pheochromocytoma, Retinal capillary hemangioma)

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: p.L140Sfs*4 (c.417dup)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: N/A

      CAID: CA2573051216, https://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/by_canonicalid?canonicalid=CA2573051216

      gnomAD: N/A

      VariantEvidence: Stated as c.417_418insT by the authors.

      MutationType: duplication; plus_1_frameshift_variant

      CivicName: L140Sfs*4 (c.417dup)

      MultipleGeneVariants: N/A

    2. PatientID: 5

      KindredID: 5

      Case: M, 43Y0M, Korean

      DiseaseAssertion: VHL

      FamilyInfo: No family history of VHL.

      CohortInfo: 26 Korean patients with more than one HAB in the CNS or eye, a single HAB in the CNS or retina plus a visceral manifestation (multiple renal, pancreatic or hepatic cysts, pheochromocytoma and RCC) and positive family history plus any one of the above manifestations.

      CasePresentingHPOs: HP:0010797; HP:0005562 (Hemangioblastoma, Multiple renal cysts)

      CaseHPOFreeText: Multiple or bilateral CNS hemangioblastoma and renal cysts. Diagnosed with VHL Type 1. Phenotypes revised from previous reports (see “PreviouslyPublished” section below for PMID).

      CaseNotHPOs: HP:0002666; HP:0009711; HP:0005584 (Pheochromocytoma, Retinal capillary hemangioma, Renal cell carcinoma)

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: 19270817 and/or 19949673

      SupplementalData: N/A

      Variant: p.E70K (c.208G>A)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: 43598, https://www.ncbi.nlm.nih.gov/clinvar/variation/43598/

      CAID: N/A

      gnomAD: 0.000004365, https://gnomad.broadinstitute.org/variant/3-10183739-G-A

      VariantEvidence: N/A

      MutationType: missense_variant;transition

      CivicName: E70K (c.208G>A)

      MultipleGeneVariants: N/A

    3. PatientID: 31

      KindredID: 31

      Case: F, 42Y0M, Korean

      DiseaseAssertion: VHL

      FamilyInfo: No family history of VHL.

      CohortInfo: 26 Korean patients with more than one HAB in the CNS or eye, a single HAB in the CNS or retina plus a visceral manifestation (multiple renal, pancreatic or hepatic cysts, pheochromocytoma and RCC) and positive family history plus any one of the above manifestations.

      CasePresentingHPOs: HP:0010797; HP:0005584 (Hemangioblastoma, Renal cell carcinoma)

      CaseHPOFreeText: CNS hemangioblastoma. Other phenotypes presented but not specified (one or more of: pancreatic cyst or tumor, renal or hepatic cyst). Diagnosed with VHL Type 1.

      CaseNotHPOs: HP:0002666; HP:0009711 (Pheochromocytoma, Retinal capillary hemangioma)

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: p.L128P (c.383T>C)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: 1208816, https://www.ncbi.nlm.nih.gov/clinvar/variation/1208816/

      CAID: N/A

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: missense_variant;transition

      CivicName: L128P (c.383T>C)

      MultipleGeneVariants: N/A

    4. PatientID: 30

      KindredID: 30

      Case: F, 27Y0M, Korean

      DiseaseAssertion: VHL

      FamilyInfo: No family history of VHL.

      CohortInfo: 26 Korean patients with more than one HAB in the CNS or eye, a single HAB in the CNS or retina plus a visceral manifestation (multiple renal, pancreatic or hepatic cysts, pheochromocytoma and RCC) and positive family history plus any one of the above manifestations.

      CasePresentingHPOs: HP:0010797; HP:0005584 (Hemangioblastoma, Renal cell carcinoma)

      CaseHPOFreeText: CNS hemangioblastoma. Other phenotypes presented but not specified (one or more of: pancreatic cyst or tumor, renal or hepatic cyst). Diagnosed with VHL Type 1. Phenotypes revised from previous reports (see “PreviouslyPublished” section below for PMID).

      CaseNotHPOs: HP:0002666; HP:0009711 (Pheochromocytoma, Retinal capillary hemangioma)

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: 19270817

      SupplementalData: N/A

      Variant: p.L128P (c.383T>C)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: 1208816, https://www.ncbi.nlm.nih.gov/clinvar/variation/1208816/

      CAID: N/A

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: missense_variant;transition

      CivicName: L128P (c.383T>C)

      MultipleGeneVariants: N/A

    1. Exons 2, 3 deletion

      GroupID/ KindredID: 22 / S 4

      Case: Age unknown, Sex unknown, Polish

      DiseaseAssertion: VHL

      FamilyInfo: This deletion was found in Family No. 22 with 1 member affected. Germline de novo mutations confirmed by analysis of parents’ DNA. Germline mutations (of deletion of exon 2-3) was not detected in DNA extracted from blood leucocytes of the parents.

      CasePresentingHPOs: HP:0009711 (retinal capillary hemangioma)

      CaseHPOFreeText: N/A

      CaseNotHPOs: HP:0005584; HP:0010797 (renal cell carcinoma, hemangioblastoma)

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: Exons 2, 3 deletion

      CaseProblemVariantFreeText: N/A

      LegacyVariant: N/A

      ClinVarID: N/A

      CAID: N/A

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: exon_loss_variant

      CivicName: EXON 2-3 DELETION

      MultipleGeneVariants: N/A

    1. Patients 2 and 3, monozygotic twins

      Case2: Sex not stated, age 8 months at diagnosis, ethnicity not stated

      DiseaseAssertion: Restrictive cardiomyopathy (RCM)

      FamilyInfo: Patients 2 and 3, monozygotic twins, were diagnosed with RCM at the age of 8 and 13 months, respectively. No familial history of cardiac disorders was reported in the R170W case, parental testing confirmed that the R170W variant occurred de novo (however, no parental proof was performed)

      ParentalTesting: Parental testing confirmed that the R170W variant occurred de novo (however, no parental proof was performed). Parents do not carry the variant

      CasePresentingHPOs: HP:0001723, HP:0002875, HP:0005110

      CaseHPOFreeText: Echocardiographic examination revealed a restrictive filling pattern and enlarged atria. Both children died at the age of 12 and 18 months, respectively, due to congestive heart failure and atrial fibrillation

      CaseNotHPOs: NR

      CaseNotHPOFreeText: NR

      CasePreviousTesting: NR

      Genotyping Method: Total genomic DNA was extracted from peripheral blood using FlexiGene DNA Kit (Qiagen) according to the manufacturer’s protocol. The TNNI3 gene was screened for mutations using dye terminator sequencing. In both cases additional target sequencing including a panel of 108 cardiomyopathy- and channelopathy-associated genes was performed using Illumina MiSeq as previously described

      FunctionalAnalysis: Functional analysis performed on recombinant proteins. Both cTnI-R170G/W strongly enhanced the Ca2+-sensitivity of skinned fibres, as is typical for RCM-mutations. Both mutants strongly enhanced the affinity of troponin (cTn) to tropomyosin compared to wildtype cTn. The stability of reconstituted thin filaments was reduced as revealed by electron microscopy.

      Variant: NM_000363.5:c.508C>T (p.Arg170Trp)

      ClinVar: 179285

      CAID: CA021778

      gnomAD: chr19-55154071-G-A

      AdditionalInfo: Monozygotic twin

    1. 31-year-old male of European ancestry

      Case#: 31 year old man of European ancestry. Patient ID NR.

      DiseaseAssertion: Nonischemic dilated cardiomyopathy.

      FamilyInfo: No reported family history of dilated cardiomyopathy. Both parents had normal heart exams and echocardiograms.

      ParentalTesting: Both biological parents tested negative for the TPM1 variant. Sequencing coverage was 500 to 600×. The authors thought the variant likely arose de novo. They could not rule out parental germline mosaicism.

      CasePresentingHPOs: HP:0001644, HP:0025169, HP:0001635, HP:0001640, HP:0002202, HP:0002875, HP:0002094, HP:0012764, HP:0034807

      CaseHPOFreeText: He first felt short of breath during activity. Later he felt short of breath at rest. He also had a persistent cough and abdominal swelling. Chest CT showed an enlarged heart and fluid around both lungs. The echo showed that both ventricles were enlarged and pumped poorly. His left ventricular ejection fraction was 12%. His heart failure worsened and he needed a heart transplant.

      CaseNotHPOs: HP:4000004 (no myocardial late gadolinium enhancement on cardiac MRI).

      CaseNotHPOFreeText: The biopsy and exam of the removed heart did not show evidence of active myocarditis.

      CasePreviousTesting: NR

      Genotyping Method: The Invitae Dilated Cardiomyopathy Panel used next generation sequencing to test 41 genes.

      FunctionalAnalysis: Thin filaments with T237S needed more calcium to reach the same level of activation. At low calcium the mutant filaments were less likely to be open and myosin ATPase activity was lower. Omecamtiv mecarbil restored calcium sensitivity in the lab assay. See Figures 3 through 5 and Tables 1 and 2.

      Variant: NM_001018005.2(TPM1):c.710C>G (p.Thr237Ser). Heterozygous.

      ClinVar: 1067773

      CAID: CA392724554

      gnomAD: No variant record found in gnomAD v4.1.

      AdditionalInfo: PMID 36739943. Figure 1 shows the echo and biopsy results. The clinical report called the variant a VUS. The study authors considered it likely pathogenic after lab testing.

    1. HIGH GRADE VON HIPPEL-LINDAU SYNDROME PRESENTING WITH BILATERAL PHEOCHROMOCYTOMA IN A CHILD

      PatientID: N/A (case)

      KindredID: 1

      Case: M, 9Y0M, Ethnicity Unknown

      DiseaseAssertion: pheochromocytoma

      FamilyInfo: The parents and siblings were negative for the gene mutation thus indicating that our patient has a De novo mutation.

      CasePresentingHPOs: HP:0006748 (adrenal pheochromocytoma)

      CaseHPOFreeText: previously healthy male presented with hypertension, increasing BMI despite decreased height and weight, last three years. His ultrasound was abdominal showing bilateral suprarenal masses. An abdominal MRI confirmed the finding of bilateral adrenal masses measuring 3 x 2.7 x 2.5 cm in the right and 3.6 x 3.5 x 2.7 cm in the left. He underwent a bilateral adrenalectomy and pathology resulted as bilateral pheochromocytoma

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: p.V166F (c.496G>T)

      LegacyVariant: p.V166F

      CaseProblemVariantFreeText: N/A

      ClinVarID: 2224 https://www.ncbi.nlm.nih.gov/clinvar/variation/2224/

      CAID: N/A

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: missense_variant;transversion

      CivicName: N/A

      MultipleGeneVariants: N/A

    1. PatientID: None

      KindredID: 1

      Case: M, 46Y0M, Spanish

      DiseaseAssertion: VHL

      FamilyInfo: No familial antecedents and no known familial tumors.

      CohortInfo: Probands belonging to 18 unrelated Spanish VHL families carrying germline VHL deletions.

      CasePresentingHPOs: HP:0000107; HP:0006880; HP:0006770; HP:0010797 (Renal cyst, Cerebellar hemangioblastoma, Clear cell renal cell carcinoma, Hemangioblastoma)

      CaseHPOFreeText: Medullar hemangioblastoma.

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: Exon 2-3 Deletion (c.341-?_642+?del)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: N/A

      CAID: N/A

      gnomAD: N/A

      VariantEvidence: Germline HSPC300 retention. Study provides evidence to show that loss of HSPC300 highly correlates with the absence of ccRCC in VHL patients.

      MutationType: exon_loss_variant

      CivicName: Exon 2-3 Deletion

      MultipleGeneVariants: N/A

    2. PatientID: None

      KindredID: 67

      Case: M, 25Y0M, Spanish

      DiseaseAssertion: VHL

      FamilyInfo: No familial antecedents. No known familial tumors.

      CohortInfo: Probands belonging to 18 unrelated Spanish VHL families carrying germline VHL deletions.

      CasePresentingHPOs: HP:0006880; HP:0001737; HP:0009711 (Cerebellar hemangioblastoma, Pancreatic cysts, Retinal capillary hemangioma)

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: Exon 1-2 Deletion (c.1-?_464+?del)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: N/A

      CAID: N/A

      gnomAD: N/A

      VariantEvidence: Germline HSPC300, ENST197804 and FANCD2 (unclear if partial or complete) gene deletion. Study provides evidence to show that loss of HSPC300 highly correlates with the absence of ccRCC in VHL patients.

      MutationType: exon_loss_variant

      CivicName: Exon 1-2 Deletion

      MultipleGeneVariants: Germline, HSPC300, Deletion MultipleGeneVariants: Germline, ENST197804, Deletion MultipleGeneVariants: Germline, FANCD2, Deletion

    1. We describe here a case of von Hippel-Lindau (VHL) disease with a serous cystic neoplasm of the whole pancreas. The patient was a 35-year-old woman suffering from a palpable abdominal tumor. She had a history of hemangioblastomas of the cerebellum. CT revealed large solid tumors in the pancreatic head and body, and multiple cystic lesions in the whole pancreas as well as a right renal tumor. When endoscopic retrograde cholangiopancreatography (ERCP) was performed, bleeding from the duodenal papilla was detected. Since she had some distinguishing clinical features, the diagnosis of VHL disease was made. The preoperative diagnosis of the pancreatic lesion was serous cystic neoplasms with hemosuccus pancreaticus and total pancreatectomy was performed. Histological examination of the specimen revealed serous cystic neoplasms which occupied the entire pancreas. VHL cases operated on for serous cystic neoplasms of the entire pancreas are very rare.

      PatientID: 1

      KindredID: 1

      Case: F, 35Y0M, Japanese

      DiseaseAssertion: VHL

      FamilyInfo: No relevant family history - speculated de novo but did not perform genetic testing of family members

      CasePresentingHPOs: HP:0002894; HP:0005584; HP:0006880 (pancreatic neoplasm; renal cell carcinoma; hemangioblastomas of the cerebellum)

      CaseHPOFreeText: A 35Yo woman became aware of a tumour - giant masses in the whole pancreas and a tumor of the right kidney - after giving birth to a healthy boy. History of cerebal hemangiomas treated by surgery 14Y previously (at 21 years old). (serous cystic neoplasms pancreas; Right renal cell carcinoma; hemangioblastomas of the cerebellum)

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: p.N78I (c.233A>T)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: 223169 https://www.ncbi.nlm.nih.gov/clinvar/variation/223169/

      CAID: N/A

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: missense_variant;transversion

      CivicName: N78I (c.233A>T)

      MultipleGeneVariants: N/A

    1. girl aged 7 years and 8 months

      Case#:7 ¾ year old girl

      DiseaseAssertion: Hypertrophic cardiomyopathy (HCM), with ventricular tachycardia and Stokes–Adams syndrome.

      FamilyInfo: Parents not consanguineous, no family history of cardiovascular disease or sudden cardiac death.

      ParentalTesting: Parents not consanguineous, no symptoms

      CasePresentingHPOs: HP:0001639, HP:0001695, HP:0001663, HP:0001250, HP:0001678, HP:0001712 “Hypertrophic cardiomyopathy, cardiac arrest, ventricular tachycardia, seizures, atrioventricular block, left ventricular hypertrophy:”

      CaseHPOFreeText: Diagnosed with cardiomyopathy in utero. Frequent cardiac arrests from 3-7, multiple seizures a year, cardiac mri showed heart enlargement, hypertrophy, after icd implant no cardiac arrests after 1 year.

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: diagnosed with cardiomyopathy in utero, no other testing stated.

      Genotyping Method: Whole exon sequencing

      FunctionalAnalysis: protein modeling only, revealed to be “probably damaging” score 1.0

      Variant: MYH7 NM_000257.3:c.2723T>C (p.Leu908Pro; p.L908P)

      ClinVar: no id but is listed under https://www.ncbi.nlm.nih.gov/clinvar/RCV000158849.1/?cmd=HTOn&utm_source=chatgpt.com

      CAID: N/A

      gnomAD:N/A

      AdditionalInfo: patient underwent ICD implantation and had no further arrests after a years time.

    1. VHL-17c.499C > Tp.Arg167Trp[2]noA2+–+Multiple––

      PatientID: VHL-17

      KindredID: 17

      Case: Sex Unknown, Age Unknown, Italian

      DiseaseAssertion: VHL

      FamilyInfo: No family history of VHL.

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

      CasePresentingHPOs: HP:0010797; HP:0002666; HP:0001732 (Hemangioblastoma, Pheochromocytoma, Abnormality of the pancreas)

      CaseHPOFreeText: CNS hemangioblastoma and multiple pheochromocytomas. Clinical classification: A2.

      CaseNotHPOs: HP:0005584; HP:0009711 (Renal cell carcinoma, Retinal capillary hemangioma)

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: p.R167W (c.499C>T)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: 2218, https://www.ncbi.nlm.nih.gov/clinvar/variation/2218/

      CAID: N/A

      gnomAD: 0.000007954, https://gnomad.broadinstitute.org/variant/3-10191506-C-T?dataset=gnomad_r2_1

      VariantEvidence: N/A

      MutationType: missense_variant;transition

      CivicName: R167W (c.499C>T)

      MultipleGeneVariants: N/A

    2. VHL-15c.256C > Tp.Pro86Ser[27]noA2+–+–––

      PatientID: VHL-15

      KindredID: 15

      Case: Sex Unknown, Age Unknown, Italian

      DiseaseAssertion: VHL

      FamilyInfo: No family history of VHL.

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

      CasePresentingHPOs: HP:0010797; HP:0001732 (Hemangioblastoma, Abnormality of the pancreas)

      CaseHPOFreeText: CNS hemangioblastoma. Clinical classification: A2.

      CaseNotHPOs: HP:0005584; HP:0002666; HP:0009711 (Renal cell carcinoma, Pheochromocytoma, Retinal capillary hemangioma)

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: p.P86S (c.256C>T)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: 178692, https://www.ncbi.nlm.nih.gov/clinvar/variation/178692/

      CAID: N/A

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: missense_variant;transition

      CivicName: P86S (c.256C>T)

      MultipleGeneVariants: N/A

    1. Case 1 A 33-year-old woman with no unusual medical history presented in November 1999 with an 8-month history of right-sided otalgia and progressive hearing loss. Otoscopic examination revealed a reddish, raspberry-like hypotympanic mass behind a normal tympanic membrane. Audiometry revealed complete hearing loss of the right ear. Computed tomographic (CT) scan and magnetic resonance imaging (MRI) revealed lysis of the posterior face of the petrous pyramid by a voluminous heterogenous mass invading the infralabyrinthine and retrolabyrinthine regions (Fig. 1, A and B) and the posterior cranial fossa (Fig. 1, C and D) and an infracentimetric hypervascular lesion in the right cerebellum highly suggestive of a hemangioblastoma. These findings evoked the diagnosis of ELST associated with VHL disease.

      PatientID: 1

      KindredID: 1

      Case: F, 33Y0M, ethnicity unknown

      DiseaseAssertion: assumed VHL

      FamilyInfo: The patient's family members (parents and 2 daughters aged 10 and 5 yr) underwent genetic testing. The same mutation was found in the youngest daughter, although full evaluation did not reveal any tumor localization.

      CasePresentingHPOs: HP:0030393; HP:0000107; HP:0009726; HP:0001737; HP:0006880 (endolymphatic sac tumour; renal cyst; renal neoplasm; pancreatic cysts; cerebellar hemangioblastoma)

      CaseHPOFreeText: hypotympanic mass was found behind a normal tympanic membrane. Audiometry revealed complete hearing loss of the right ear - CT and MRI revealed lysis of the posterior face of the petrous pyramid by a voluminous heterogenous mass invading the infralabyrinthine and retrolabyrinthine regionsand the posterior cranial fossa, and an infracentimetric hypervascular lesion in the right cerebellum highly suggestive of a hemangioblastoma. These findings evoked the diagnosis of ELST associated with VHL disease. Abdominal ultrasonography and MRI of the patient showed multiple pancreatic cysts but no renal or adrenal gland abnormalities. Regular medical follow-up 4 years after the discovery of the disease showed a right renal cyst and centimetric tumor of the left kidney.

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: p.D92G (c.275A>G)

      CaseProblemVariantFreeText: N/A

      LegacyVariant: N/A

      ClinVarID: N/A

      CAID: CA351750765 http://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/allele?hgvsOrDescriptor=NM_000551.3%3Ac.275A%3EG

      gnomAD: N/A

      VariantEvidence: Histopathology showed a low-grade papillary adenocarcinoma of the endolymphatic sac, with strong immunoreactivity for cytokeratin (KL1), vimentin, and neuron-specific enolase and low immunoreactivity for epithelial membrane antigen.

      MutationType: missense_variant;transition

      CivicName: D92G (c.275A>G)

      MultipleGeneVariants: N/A

    1. Finally, the R167G mutation was detected in a 20-year-old woman, whose family screening indicated the absence of mutation in her mother and two brothers.

      PatientID: None (Proband)

      KindredID: ASP (R167G)

      Case: F, 20Y0M, Hungarian

      DiseaseAssertion: VHL

      FamilyInfo: Mutation was absent in mother and two brothers. Proband of this family presented with an apparently sporadic pheochromocytoma and the R167G germline mutation of the VHL gene.

      CasePresentingHPOs: HP:0002666 (Pheochromocytoma)

      CaseHPOFreeText: Presented with an apparently sporadic unilateral pheochromocytoma. VHL phenotype noted as type 2C.

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: Clinical evaluation of the three patients indicated the absence of other VHL-related tumors.

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: p.R167G (c.499C>G)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: 2219, https://www.ncbi.nlm.nih.gov/clinvar/variation/2219/

      CAID: N/A

      gnomAD: 0.000007954, https://gnomad.broadinstitute.org/variant/3-10191506-C-T?dataset=gnomad_r2_1

      VariantEvidence: Variant reported as R167G and cDNA change was mapped to c.499C>G.

      MutationType: missense_variant;transversion

      CivicName: R167G (c.499C>G)

      MultipleGeneVariants: N/A

    1. frameshift mutations (4/16)

      PatientID: 12

      KindredID: 12

      Case: 32Y0M, Sex Unknown, Argentinian

      DiseaseAssertion: VHL

      FamilyInfo: Family history unremarkable; Patient was confirmed to have a de novo mutation.

      CasePresentingHPOs: HP:0010797; HP:0009711; HP:0000107; HP:0030424 (hemangioblastoma; retinal capillary hemangioma; renal cyst; epididymal cyst)

      CaseHPOFreeText: Aged 32Y at diagnosis (genetic testing); fulfils type 1 VHL clinical diagnosis. Retinal hemangioblastomas and CNS hemangioblastomas diagnosed at 32Y, renal cysts were also diagnosed at 32Y, while epididymal cysts were diagnosed first at 23Y (See Table 1 & 2).

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: p.V74Sfs*53 (c.219_232delGGTCATCTTCTGCA)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: N/A

      CAID: CA2497423672 http://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/by_caid?caid=CA2497423672

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: minus_2_frameshift_variant

      CivicName: V74Sfs*53 (c.219_232delGGTCATCTTCTGCA)

      MultipleGeneVariants: N/A

    1. After genetic counseling and with informed consent, mutation analysis was performed in the parents, a sibling, and, subsequently, in the paternal grandparents. The heterozygous mutation c.491A > G (Q164R) arose de novo in the patient's 31-year-old father who had so far been free of medical complaints and was normotensive (Fig. 2). Upon screening, a retinal angioma, an adenoma of the right adrenal gland of 1.5 cm in diameter, a right-sided renal cyst, an epididymal cyst, a contrast-enhancing lesion in the pancreas and bilateral pheochromocytomas with pronounced tracer-uptake on I-123-MIBG-scan and F-18-DOPA-PET-scan were detected. Noradrenaline, normetanephrine, and plasma-normetanephrine were elevated. Chromogranin A values were increased in plasma. The father underwent laparoscopic bilateral adrenalectomy and received focal ophthalmologic treatment for the retinal angioma

      PatientID: N/A (father)

      KindredID: 1

      Case: M, 33Y0M, Ethnicity Unknown

      DiseaseAssertion: assumed VHL

      FamilyInfo: Analyses of his daughter revealed this mutation after adrenal pheochromocytoma were discovered before she was 3Y. Genetic testing was done on this patient, his wife, his other child, and his parents. The mutation was found to have occurred de novo as both of his parents were negative.

      CasePresentingHPOs: HP:0009711; HP:0000107; HP:0030424; HP:0006748 (retinal capillary hemangioma, hemangioblastoma, endolymphatic sac tumor, adrenal pheochromocytoma)

      CaseHPOFreeText: After testing of his daughter, this man, free of medical complaints, was screened to find a retinal angioma, an adenoma of the right adrenal gland of 1.5 cm in diameter, a right-sided renal cyst, an epididymal cyst, a contrast-enhancing lesion in the pancreas and bilateral pheochromocytomas with pronounced tracer-uptake on I-123-MIBG-scan and F-18-DOPA-PET-scan were detected. Noradrenaline, normetanephrine, and plasma-normetanephrine were elevated. Chromogranin A values were increased in plasma. The father underwent laparoscopic bilateral adrenalectomy and received focal ophthalmologic treatment for the retinal angioma. 

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: p.Q164R (c.491A>G)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: 2238 https://www.ncbi.nlm.nih.gov/clinvar/variation/2238/

      CAID: N/A

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: missense_variant;transition

      CivicName: Q164R (c.491A>G)

      MultipleGeneVariants: N/A

    1. We report two young male twins with simultaneously manifesting haemangioblastomas of the right cerebellar hemisphere. In one, the neoplasm was associated with medullary and spinal cord solid tumours; in the other, with a nasopharyngeal bleeding fibroangioma, an association not described previously.

      PatientID: III-2

      KindredID: 1

      Case: M, 16Y0M, ethnicity unknown

      DiseaseAssertion: VHL

      FamilyInfo:  2 young male twins were examined with the VHL gene mutation with simultaneously manifesting hemangioblastomas of the right cerebellar hemisphere. Both parents were examined with no VHL mutation, detecting a de novo mutation in the twins. A third sibling, two years older, presented with a cafè au lait skin spot. Grand mother had bilateral high myopia and glaucoma. The medical history of the pedigree shows that member (I-1) had severe hypertension and died at 60 from a stroke, member (I-2) died at 40 from ovarian carcinoma, and member (I-3) died at 54 from clinically diagnosed intracerebral haemorrhage.

      CasePresentingHPOs: HP:0006880; HP:0009713 (cerebellar hemangioblastoma, spinal hemangioblastoma)

      CaseHPOFreeText: in 1994 patient came complaining of blurred vision thought to be due to his myopia. MRI showed a large cyst and a 4.3 cm mural ovoid nodule in the right cerebellar hemisphere. Another small mural nodule was present in the infero-posterolateral portion of the right cerebellar hemisphere. CT disclosed a round homogeneous, hyperintense nodule at T1 in the spinal cord. Raised intracranial pressure due to the compression of aqueduct from the tumour accounted for hydrocephalus and enlarged lateral and 3rd ventricles.

      CaseNotHPOs: HP:0001901 (polycythemia)

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: p.N78S (c.233A>G)

      CaseProblemVariantFreeText: N/A

      LegacyVariant: p.N78S (c.446A>G)

      ClinVarID: 93326 https://www.ncbi.nlm.nih.gov/clinvar/variation/93326/

      CAID: N/A

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: missense_variant; transition

      CivicName: N/A

      MultipleGeneVariants: N/A

    1. 33-year-old female patient

      Case1: Female, 33 yrs report

      DiseaseAssertion: MYH7 Gene-Related Skeletal Myopathy

      FamilyInfo: Uneventful family history

      CasePresentingHPOs: HP:0002650, HP:0001324, HP:0001263, HP:0001252, HP:0006794, HP:0002652, HP:0002751, HP:0002094, HP:0003121, HP:0003044, HP:0006471, HP:0003273, HP:0008112 (Scoliosis, Muscle weakness, Global developmental delay, Muscular hypotonia, Loss of ability to walk in first decade, Skeletal dysplasia, Kyphoscoliosis, Dyspnea, Limb joint contracture, Shoulder flexion contracture, Fixed elbow flexion, Hip contracture, Plantar flexion contractures)

      CaseHPOFreeText: EMG: short duration, small amplitude motor unit action potential (MUAP), and early recruitment patterns were observed in the involved proximal muscles

      CaseNotHPOs: HP:0001239, HP:0012785, HP:0002127, HP:0100543 (Wrist flexion contracture, Flexion contracture of finger, Abnormal upper motor neuron morphology, Cognitive impairment)

      CaseNotHPOFreeText: No significant abnormal findings during the perinatal period and at the time of birth

      CasePreviousTesting: SMN 1del/dup test was performed and no specific findings were observed, Physical exam, serologic test, and neurophysiologic test, including nerve conduction study (NCS) and electromyogram (EMG), were performed, On the manual muscle test (MMT) she received a grade of 4 for wrist flexor, extensor muscle, finger flexor, and extensor muscle, and a grade of 1 for all other upper and lower limb muscles, Cobb angle was 126° at the time of measurement, NGS using a targeted gene sequencing panel analyzing 293 genes performed using 2 x 150 bp in the paired-end mode of MiSeq platform from Illumina

      CaseGenotypingMethod: Chromosomal microarray was performed with no abnormal findings. A NGS study was then performed on the proband using a targeted gene sequencing panel for neuromuscular diseases. Genomic DNA was extracted and captured, with massively parallel sequencing and subsequent reading and annotating/filtering of any located variants.

      Variant: NM_000257.4:c.1495_1497delGAG (p.Glu500del)

      ClinVar: 525034

      gnomAD: Not in gnomAD

    1. A 41-year-old male proband diagnosed with DCM underwent comprehensive clinical evaluation.

      Case#:male, 41, DCM

      DiseaseAssertion:dilated cardiomyopathy

      FamilyInfo:The proband reported that his mother died suddenly at approximately 35 years of age (specific cause unknown). Other family members were healthy with no history of cardiac disease. Written informed consent was obtained from all participants.

      ParentalTesting:no parental testing reported. Sanger sequencing of available family members (daughter, half-brother, maternal uncle and maternal aunt) confirmed that none carried the variant, supporting its de novo origin

      CasePresentingHPOs:HP:0002875, HP:0001644, HP:4000141, HP:6000313

      CaseHPOFreeText: ECG showed sinus bradycardia, occasional atrial premature beats, delayed atrioventricular conduction, left atrial enlargement, left ventricular high voltage, incomplete right bundle branch block, and ST-T changes (Figure 1C). CMR revealed late gadolinium enhancement (LGE) in the basal to mid-septal and anterolateral segments of the left ventricle (Figure 1D).

      CaseNotHPOs:HP:0000822, HP:0003077

      CaseNotHPOFreeText:He denied a history of hyperlipidemia, hypertension, or substance abuse.

      CasePreviousTesting:No reports of previous testing

      Genotyping Method:whole-exome sequencing and Sanger sequencing

      FunctionalAnalysis:not reported

      Variant:c.547C>T p.Arg183Trp

      ClinVar:43628

      CAID:CA004294

      gnomAD:Overall allele frequency: 0.000001239

      AdditionalInfo:not reported

    1. subject (33-year-old female) showed regular psychophysical development

      Case#: 33 year-old female; first cardiologic evaluation at age 24 (LV wall thickness 13 mm); re-evaluated at 33 after recurrent palpitations

      DiseaseAssertion: Noonan syndrome (PTPN11) with sarcomeric hypertrophic cardiomyopathy (MYBPC3); non-obstructive HCM, mild phenotype

      FamilyInfo: Father carries the MYBPC3 c.1790G>A variant and has HCM; the PTPN11 variant was absent in both parents, consistent with de novo. Both parents and the proband's brothers underwent full cardiologic evaluation, no cardiovascular disease in the other family members. Parents declined genetic testing of the underage siblings. Grandparents (I-1, I-2) and II-2, II-3 have unknown phenotypes (pedigree Fig. 2).

      ParentalTesting: Both parents genotyped for the two proband variants (Table 1). Father heterozygous for MYBPC3 c.1790G>A; neither parent carries PTPN11 c.1510A>G, supporting de novo status. Phase between the two variants therefore established as in trans (different genes).

      CasePresentingHPOs: HP:0001639; HP:0001962; HP:0004322; HP:0000271; HP:0001647; HP:0000508

      CaseHPOFreeText: Regular psychophysical development. First echo at 24 showed mild increase in LV wall thickness (13 mm). At 33, presented with several episodes of palpitations; exam showed mild facial dysmorphisms (wide mouth, sloping forehead, prominent nasal bridge, prominent nose, low-set ears), short stature, and a systolic heart murmur. Echo: asymmetric LV hypertrophy, maximum wall thickness 16 mm at the anterior interventricular septum, mild mitral regurgitation, non-obstructive. No other cardiovascular signs.

      CaseNotHPOs: HP:0001635; HP:0001650; HP:0001642; HP:0001250

      CaseNotHPOFreeText: No heart failure, no LV outflow obstruction, no pulmonary stenosis, no other congenital heart defect. No intellectual disability; psychophysical development was regular. No other signs of cardiovascular disease on examination.

      CasePreviousTesting: NGS panel of 325 cardiomyopathy-associated genes (Supplementary Table S1); MAF threshold 5%; variants validated by Sanger sequencing; cascade testing restricted to the two proband variants.

      Genotyping Method: NGS targeted panel (Maxwell 16 DNA extraction, Agilent Alyssa analysis, Illumina Variant Interpreter, in-house pipeline) with Sanger validation; parental Sanger genotyping for the same two variants.

      FunctionalAnalysis: None performed by the authors. They cite prior HeLa cell work showing the MYBPC3 c.1790G>A change causes exon 18 inclusion in the transcript and an almost undetectable 248 bp product.

      Variant 1: PTPN11 NM_002834.3:c.1510A>G (p.Met504Val); heterozygous missense; de novo; classified pathogenic, explains Noonan syndrome

      ClinVar: Not stated in the paper; verify the current record before submitting.

      CAID: N/A

      gnomAD: Not reported in the paper; I have not checked gnomAD for this variant.

      Variant 2: MYBPC3 NM_000256.3:c.1790G>A (p.Arg597Gln); heterozygous missense; exon 18, last nucleotide of the exon, affecting a highly conserved residue and causing a splicing variation; inherited from the father

      ClinVar: Not stated in the paper; authors note it is classified pathogenic/likely pathogenic for HCM in several genetic databases.

      CAID: N/A

      gnomAD: N/A

      PMID: 32824488

      Gene: MYBPC3

      AdditionalInfo: Authors describe this as the first reported young adult with HCM and mild NS carrying variants in both PTPN11 and MYBPC3. Note the terminology problem: the abstract calls them "compound heterozygous," but the variants are in different genes on different chromosomes, so this is digenic (double heterozygosity), not compound heterozygosity. The authors argue the mild phenotype contrasts with the usual expectation that multiple sarcomeric hits worsen the disease, and that red flags justified the broad panel.

    1. 117 31 c.465_470del6 p.156_157delYT x x x De novo Parents and siblings -

      PatientID: 117

      KindredID: 117

      Case: Sex Unknown, 31Y0M, Ethnicity Unknown

      DiseaseAssertion: VHL

      FamilyInfo: Parents and siblings were all negative for the mutation. No phenotype details are noted for these family members.

      CasePresentingHPOs: HP:0010797; HP:0001732; HP:0009711 (Hemangioblastoma, Abnormality of the pancreas, Retinal capillary hemangioma)

      CaseHPOFreeText: CNS hemangioblastoma, retinal hemangioblastoma and pancreatic cyst or tumor.

      CaseNotHPOs: HP:0002666; HP:0006770; HP:0000107 (Pheochromocytoma, Clear cell renal cell carcinoma, Renal cyst)

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: Table S1, S2 and S3

      Variant: p.Y156_T157del (c.465_470del)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: N/A

      CAID: CA16621939, https://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/allele?hgvsOrDescriptor=NM_000551.3%3Ac.465_470del

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: inframe_deletion; deletion

      CivicName: Y156_T157del (c.465_470del)

      MultipleGeneVariants: N/A

    2. 2 43 c.464T>G p.Val155Gly x x De novo Parents, sibling, and nephew -

      PatientID: 2

      KindredID: 2

      Case: Sex Unknown, 43Y0M, Ethnicity Unknown

      DiseaseAssertion: VHL

      FamilyInfo: Parents, siblings and nephew were negative for the mutation confirming that this variant was de novo in the proband. No phenotype details are noted for these family members.

      CasePresentingHPOs: HP:0002666; HP:0009711 (Pheochromocytoma, Retinal capillary hemangioma)

      CaseHPOFreeText: N/A

      CaseNotHPOs: HP:0000107; HP:0006770; HP:0010797; HP:0001732 (Renal cyst, Clear cell renal cell carcinoma, Hemangioblastoma, Abnormality of the pancreas)

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: Table S1, S2 and S3

      Variant: p.V155G (c.464T>G)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: N/A

      CAID: CA16621938, https://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/allele?hgvsOrDescriptor=NM_000551.3%3Ac.464T%3EG

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: missense_variant;transversion

      CivicName: V155G (c.464T>G)

      MultipleGeneVariants: N/A

    1. Due to recurrent hemangioblastomas, a29-year-old patient without familial history of VHL disease was diagnosed to be at risk for the disease. Histopathological examination of a small renal mass identified a clear cell tumor with a G1 grading. Genetic characterization of the germline and of the renal tumor was performed. Polymerase chain reaction/single strand conformation polymorphism (PCR/SSCP) analysis with primers from the VHL gene identified a deletion of a single nucleotide in exon 2 in the patient's germline and in the tumor, but not in the DNA of his parents. This deletion therefore must be a de novo mutation. Comparative genome hybridization (CGH) and fluorescence in situ hybridization (FISH) analysis of the G1 tumor with differentially labelled yeast artifical chromosome (YAC) clones showed loss of 3p and of the 3p26 signals, respectively. In conclusion, we identified a de novo germline mutation in the VHL gene of a young patient and a somatic chromosome 3p loss at the homologous chromosome 3 in his renal tumor. Our results suggest a recessive mode of inactivation of the VHL gene, providing solid evidence for its tumor-suppressor gene characteristics. Our data show the diagnostic potential of genetic testing, especially in patients without VHL family history. Furthermore, the findings of homozygous inactivation of the VHL gene in a G1 tumor support the notion that the inactivation of the VHL gene is an early event in tumorigenesis of renal cell carcinoma.

      PatientID: Proband

      KindredID: 1

      Case: M, 29Y0M, Ethnicity Unknown

      DiseaseAssertion: VHL

      FamilyInfo: No other family members presented with any signs of VHL disease. The patient’s aunt died from breast cancer at 46Y, the grandfather died of leukemia at 56Y.

      CasePresentingHPOs: HP:0009713; HP:0006770; HP:0001737; HP:0005562 (Spinal hemangioblastoma, Clear cell renal cell carcinoma, Pancreatic cysts, Multiple renal cysts)

      CaseHPOFreeText: Presented with recurrent spinal hemangioblastomas. Ultrasonography and computed tomography showed pancreatic and renal cysts and a renal mass. Histology after surgery to resent the renal tumor showed clear cell renal cell carcinoma.

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: p.F148Lfs*11 (c.444del)

      LegacyVariant: c.653del

      CaseProblemVariantFreeText: N/A

      ClinVarID: 223212, https://www.ncbi.nlm.nih.gov/clinvar/variation/223212/

      CAID: N/A

      gnomAD: N/A

      VariantEvidence: Sequencing revealed one nucleotide was deleted from the pentameric thymidines nucleotides 653–657 of exon 2 of the VHL gene, predicted to result in a stop codon, in both constitutional blood and tumor samples. All other family members tested, including his 34-year-old sister, did not show any alteration of the gene, either by SSCP analysis or by sequencing. Based on the description of the pentameric thimidines at 653-657, it was concluded that the authors reported the variant according to legacy nomenclature (AF010238.1). This was mapped to p.Phe148Leufs*11 (c.444del) according to the reference sequence NM_000551.3. Homozygous inactivation of the VHL gene in a G1 tumor support the notion that the inactivation of the VHL gene is an early event in tumorigenesis of renal cell carcinoma.

      MutationType: deletion; minus_1_frameshift_variant

      CivicName: F148Lfs*11 (c.444del)

      MultipleGeneVariants: N/A

    1. We present the case of a 22-year-old woman who was diagnosed in childhood with type IIb VHL, with known multiple retinal angiomas, pancreatic cysts, and spinal and cerebellar hemangioblastomas. She was admitted to our hospital complaining of progressive dyspnea and palpitations. On examination, her blood pressure was 159/119 mm Hg and her pulse was 123 bpm. Physical examination revealed a systolic murmur at the mitral focus with irradiation to the axilla and pulmonary rales. Electrocardiography revealed no remarkable findings, except for sinus tachycardia. Laboratory tests showed an elevated N-terminal pro-brain natriuretic peptide and chest X-ray showed signs of pulmonary interstitial edema. The patient was admitted to the Department of Cardiology with the diagnosis of acute decompensated heart failure. Transthoracic echocardiography showed a dilated left ventricle with severely depressed ejection fraction due to generalized hypokinesia and a mild mitral regurgitation (fig. ​(fig.1a).1a). During admission, the patient had several episodes of paroxysmal dyspnea despite treatment with β-blockers and diuretics. Due to the clinical suspicion of adrenal gland disease, 24-hour urinary catecholamine and metanephrine tests were requested. Cardiac MRI was performed in order to complete the cardiomyopathy study, and confirmed the echocardiographic findings as well as revealed an incidental finding of a great left renal mass. The 24-hour urine laboratory tests showed markedly elevated levels of norepinephrine, total catecholamines, normetanephrine and metanephrine with normal epinephrine values: 24-hour norepinephrine 468 μg (normal range: 23-105), 24-hour epinephrine 13 μg (normal range: 4-20), 24-hour total catecholamines 658 μg (normal range: 217-575), 24-hour normetanephrine 2,988 μg (normal range: 105-354), 24-hour total metanephrine 3,013 μg (normal range: 0-1,000). Therefore, an abdominal MRI was performed, which showed the presence of two cystic masses (fig. ​(fig.2)2) located at the left hypochondrium. Surgical resection of both masses was performed (after α-blockade with phenoxybenzamine and β-blockade with propranolol) through a laparoscopic approach, confirming the diagnosis of pheochromocytoma and clear cell renal carcinoma on histology. During follow-up, blood pressure and heart rate values normalized (124/77 mm Hg, 78 bpm), 24-hour urinary catecholamine values returned to normal range (norepinephrine 69 μg/24 h, total catecholamine 221 μg/24 h, normetanephrine 202 μg/24 h and total metanephrine 259 μg/24 h) and the patient had no new episodes of palpitations or dyspnea. Six months after surgical resection, echocardiography was repeated and showed a left ventricle with normal diameters and preserved ejection fraction (fig. ​(fig.1b).1b). Genetic analysis revealed a germline mutation (exon 3 deletion) of the VHL tumor suppressor gene on the short arm of chromosome 3. As the patient had no family history of VHL, it was concluded that it was a de novo mutation.

      PatientID: None

      KindredID: 1

      Case: F, 22Y0M, Ethnicity Unknown

      DiseaseAssertion: VHL

      FamilyInfo: No family history of VHL, it was concluded that it was a de novo mutation.

      CasePresentingHPOs: HP:0009711; HP:0001737; HP:0009713; HP:0006880; HP:0002094; HP:0001962; HP:0011703; HP:0031664; HP:0001635; HP:0002375; HP:0001653; HP:0002666; HP:0006770 (Retinal capillary hemangioma, Pancreatic cysts, Spinal hemangioblastoma, Cerebellar hemangioblastoma, Dyspnea, Palpitations, Sinus tachycardia, Systolic heart murmur, Congestive heart failure, Hypokinesia, Mitral regurgitation, Pheochromocytoma, Clear cell renal cell carcinoma)

      CaseHPOFreeText: 22-year-old woman who was diagnosed in childhood with type IIb VHL, with known multiple retinal angiomas, pancreatic cysts, and spinal and cerebellar hemangioblastomas. She was admitted to our hospital complaining of progressive dyspnea and palpitations. Physical examination revealed a systolic murmur at the mitral focus with irradiation to the axilla and pulmonary rales. Electrocardiography revealed no remarkable findings, except for sinus tachycardia. Chest X-ray showed signs of pulmonary interstitial edema. The patient was admitted to the Department of Cardiology with the diagnosis of acute decompensated heart failure. Transthoracic echocardiography showed a dilated left ventricle with severely depressed ejection fraction due to generalized hypokinesia and a mild mitral regurgitation. During admission, the patient had several episodes of paroxysmal dyspnea. Cardiac MRI was performed in order to complete the cardiomyopathy study, and confirmed the echocardiographic findings as well as revealed an incidental finding of a great left renal mass. Abdominal MRI was performed, which showed the presence of two cystic masses located at the left hypochondrium confirming the diagnosis of pheochromocytoma and clear cell renal carcinoma on histology.

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: Exon 3 Deletion (c.464-?_642+?del)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: N/A

      CAID: N/A

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: exon_loss_variant

      CivicName: Exon 3 Deletion

      MultipleGeneVariants: N/A

  2. Nov 2026
    1. PatientID: 23

      KindredID: 23

      Case: M, 48Y0M, Korean

      DiseaseAssertion: VHL

      FamilyInfo: No family history of VHL.

      CohortInfo: 26 Korean patients with more than one HAB in the CNS or eye, a single HAB in the CNS or retina plus a visceral manifestation (multiple renal, pancreatic or hepatic cysts, pheochromocytoma and RCC) and positive family history plus any one of the above manifestations.

      CasePresentingHPOs: HP:0005584 (Renal cell carcinoma)

      CaseHPOFreeText: Multiple or bilateral renal cell carcinoma. Other phenotypes presented but not specified (one or more of: pancreatic cyst or tumor, renal or hepatic cyst). Diagnosed with VHL Type 1. Phenotypes revised from previous reports (see “PreviouslyPublished” section below for PMID).

      CaseNotHPOs: HP:0009711; HP:0002666; HP:0010797 (Retinal capillary hemangioma, Pheochromocytoma, Hemangioblastoma)

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: 16142346

      SupplementalData: N/A

      Variant: p.R108Hfs*23 (c.323_324del)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: N/A

      CAID: CA916832609, https://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/by_canonicalid?canonicalid=CA916832609

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: deletion; minus_2_frameshift_variant

      CivicName: R108Hfs*23 (c.323_324del)

      MultipleGeneVariants: N/A

    2. PatientID: 52

      KindredID: 52

      Case: F, 29Y0M, Korean

      DiseaseAssertion: VHL

      FamilyInfo: Family history negative for VHL.

      CohortInfo: 26 Korean patients with more than one HAB in the CNS or eye, a single HAB in the CNS or retina plus a visceral manifestation (multiple renal, pancreatic or hepatic cysts, pheochromocytoma and RCC) and positive family history plus any one of the above manifestations.

      CasePresentingHPOs: HP:0010797 (Hemangioblastoma)

      CaseHPOFreeText: CNS hemangioblastomas. Other phenotypes presented but not specified (one or more of: pancreatic cyst or tumor, renal or hepatic cyst). Diagnosed with VHL Type 1.

      CaseNotHPOs: HP:0002666; HP:0009711; HP:0005584 (Pheochromocytoma, Retinal capillary hemangioma, Renal cell carcinoma)

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: 19270817

      SupplementalData: N/A

      Variant: Exon 2-3 Deletion (c.341-?_642+?del)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: N/A

      CAID: N/A

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: exon_loss_variant

      CivicName: Exon 2-3 Deletion

      MultipleGeneVariants: N/A

    1. A 22-year-old man complained of a shadow in his right eye and was diagnosed with retinal detachment secondary to a retinal hemangioblastoma. His family history was noncontributory and physical examination normal except for a right epididymal cyst. Laboratory studies were unremarkable. Magnetic resonance imaging (MRI) of his brain revealed a hypervascular lesion in the medulla (large arrow; Figure A) and a smaller lesion at the medullary-spinal cord junction (small arrow; Figure A). A T2-weighted abdominal MRI demonstrated innumerable pancreatic cysts (Figure B) and multiple benign-appearing renal cysts. After surgical resection of the retinal hemangioblastoma, the patient remains asymptomatic. What is the diagnosis?

      PatientID: None

      KindredID: 1

      Case: M, 22Y0M, Ethnicity Unknown

      DiseaseAssertion: VHL

      FamilyInfo: No notable family history.

      CasePresentingHPOs: HP:0000541; HP:0010797; HP:0009711; HP:0030424; HP:0005562; HP:0001737 (Retinal detachment, Hemangioblastoma, Retinal capillary hemangioblastoma, Epididymal cyst, Multiple renal cysts, Pancreatic cysts)

      CaseHPOFreeText: Complained of a shadow in his right eye and was diagnosed with retinal detachment secondary to a retinal hemangioblastoma. MRI of the brain revealed a hyper vascular lesion in the medulla and a smaller lesion at the medullary-spinal cord junction. Weighted abdominal MRI revealed innumerable pancreatic cysts and multiple benign-appearing renal cysts. After surgical resection of the retinal hemangioblastoma, the patient remains asymptomatic.

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: p.K159* (c.474_475insT)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: N/A

      CAID: CA432423112, https://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/allele?hgvsOrDescriptor=NM_000551.3%3Ac.474_475insT

      gnomAD: N/A

      VariantEvidence: Reported as: NT474INST. Authors state that this is believed to be a novel sporadic mutation.

      MutationType: insertion; plus_1_frameshift_variant; stop_gained

      CivicName: K159* (c.474_475insT)

      MultipleGeneVariants: N/A

    1. PatientID: None

      KindredID: 1

      Case: F, 24Y0M, Ethnicity Unknown

      DiseaseAssertion: Assumed VHL

      FamilyInfo: Third child of healthy unrelated parents; she has two healthy older sisters.

      CasePresentingHPOs: HP:0001511; HP:0001999; HP:0000952; HP:0001943; HP:0001508; HP:0000851; HP:0001250; HP:0002650; HP:0001332; HP:0001263; HP:0006880 (Intrauterine growth retardation, Abnormal facial shape, Jaundice, Hypoglycemia, Failure to thrive, Congenital hypothyroidism, Seizure, Scoliosis, Dystonia, Global developmental delay, Cerebellar hemangioblastoma)

      CaseHPOFreeText: Normally born after 37 weeks pregnancy. During the prenatal period, she showed intrauterine growth retardation of unknown cause. At birth, dysmorphic features were noted (full list in table 1). After birth, she was treated for physiological jaundice and hypoglycemia. In addition, she has problem for failure to thrive and feeding difficulties associated with poor sucking and regurgitation. Furthermore, she was diagnosed with a congenital hypothyroidism in the neonatal screening. At 26 months old, she developed epilepsy. At 7Y, was considered to have Rett syndrome because of stereotypic hand movements since 2 years old, scoliosis and dystonia. Her psychomotor development was severely delayed: she had no ability to move by herself, visual contact, or social interaction. Brain MRI was performed at 1 year old and 6 years old. Both of these showed no abnormal findings. At 16 years old, follow-up MRI unexpectedly demonstrated a solid tumor with peritumoral edema at right cerebellum; diagnosed a cerebellar hemangioblastoma and confirmed through histopathology.

      CaseNotHPOs: HP:0002012 (Abnormality of the abdominal organs)

      CaseNotHPOFreeText: Repeat brain MRI, fundoscopy, abdominal echography and CT, blood and urine testing revealed no other tumors associated with VHL.

      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: No mutation was detected in MECP2 on chromosome Xq28. At 5 months old, her chromosome analysis of the white blood cells revealed a distal deletion of the short arm of chromosome 3. Genomic DNA from the patient and her parents revealed a de novo 11.0-Mb deletion at 3p26.3-25.3 that included VHL and a paternally inherited 740-kb gain at Xp22.2-22.13, which was predicted to be a benign copy number variation. Unfortunately, since the mutation analysis of VHL was not performed using resected tumor tissues in the present case, “the second hit” could not be confirmed. Thus, the reason remains unclear why a cerebellar hemangioblastoma developed in her.

      MutationType: deletion

      CivicName: 3p26.3-25.3 11Mb del

      MultipleGeneVariants: see VariantEvidence.

    1. c.593T>C, p.L198P

      PatientID: II-1

      KindredID: Family C

      Case: M, 45Y0M, Ethnicity unknown

      DiseaseAssertion: VHL

      FamilyInfo: Only this one member was studied. This mutation was said to be a de novo, although no more inforation provided. However the asymptomatic father of patient was also a carrier of the same polymorphism (c.74C>T, p.P25L).

      CasePresentingHPOs: HP:0006748; HP:0030405; HP:0009711 (Adrenal pheochromocytoma; pancreatic neuroendocrine tumour; retinal capillary hemangioma)

      CaseHPOFreeText: At the age of 15, patient had pancreatic tumor (malignant pancreatic neuroendocrine tumor). At the age of 16, MRI revealed suprarenal tumor masses bilaterally (pheochromocytomas in the adrenal glands), as well as optic nerve hemangioblastomas of the right eye. At the age of 25, he shows no signs of metastases or new VHL-associated tumors, but since the age of 23, he has been suffering from HLAB27-positive ankylosing spondylitis.

      CaseNotHPOs: HP:0005584; HP:0010797 (renal cell carcinoma; hemangioblastoma)

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: p.L198P (c.593T>C)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: 223235 https://www.ncbi.nlm.nih.gov/clinvar/variation/223235/

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: missense_variant;transition

      CivicName: L198P (c.593T>C) AND P25L (c.74C>T)

      MultipleGeneVariants: Germline, VHL, c.74C>T (p.Pro25Leu)

    1. VHL-25c.1 − ?_463 + ?Del ex 1 + 2[11]noA2Multiple–+––Renal

      PatientID: VHL-25

      KindredID: 25

      Case: Sex Unknown, Age Unknown, Italian

      DiseaseAssertion: VHL

      FamilyInfo: No family history of VHL.

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

      CasePresentingHPOs: HP:0010797; HP:0000107; HP:0001732 (Hemangioblastoma, Renal cyst, Abnormality of the pancreas)

      CaseHPOFreeText: Multiple CNS hemangioblastomas. Clinical classification: A2.

      CaseNotHPOs: HP:0002666; HP:0005584; HP:0009711 (Pheochromocytoma, Renal cell carcinoma, Retinal capillary hemangioma)

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: Exon 1-2 Deletion (c.1-?_463+?del)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: N/A

      CAID: N/A

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: exon_loss_variant

      CivicName: Exon 1-2 Deletion

      MultipleGeneVariants: N/A

    2. VHL-20c.499C > Tp.Arg167Trp[2]noA2–––++–

      PatientID: VHL-20

      KindredID: 20

      Case: Sex Unknown, Age Unknown, Italian

      DiseaseAssertion: VHL

      FamilyInfo: No family history of VHL.

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

      CasePresentingHPOs: HP:0002666; HP:0009711 (Pheochromocytoma, Retinal capillary hemangioma)

      CaseHPOFreeText: Clinical classification: A2.

      CaseNotHPOs: HP:0010797; HP:0005584; HP:0001732 (Hemangioblastoma, Renal cell carcinoma, Abnormality of the pancreas)

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: p.R167W (c.499C>T)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: 2218, https://www.ncbi.nlm.nih.gov/clinvar/variation/2218/

      CAID: N/A

      gnomAD: 0.000007954, https://gnomad.broadinstitute.org/variant/3-10191506-C-T?dataset=gnomad_r2_1

      VariantEvidence: N/A

      MutationType: missense_variant;transition

      CivicName: R167W (c.499C>T)

      MultipleGeneVariants: N/A

    1. GroupID/ KindredID: F2

      Case: Sex unknown, 26Y0M, Spanish

      DiseaseAssertion: assumed VHL

      FamilyInfo: None. Microsatellite analysis excluded nonpaternity for this patient, leading to the assumption that this variant was de novo in character. (assumed de novo without confirmation of maternity).

      CasePresentingHPOs: HP:0006880; HP:0001737 (cerebellar hemangioblastoma, pancreatic cysts)

      CaseHPOFreeText: cerebellar hemangioblastoma had multiple lesions. Age of onset is 26Y0M.

      CaseNotHPOs: HP:0006770; HP:0002666; HP:0000107; HP:0009711 (clear cell renal cell carcinoma, pheochromocytoma, renal cysts, retinal capillary hemangioma)

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: p.V130L (c.388G>C)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: 2229 https://www.ncbi.nlm.nih.gov/clinvar/variation/2229/

      CAID: N/A

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: missense_variant; transversion

      CivicName: V130L (c.388G>C)

      MultipleGeneVariants: N/A

    1. PatientID: 20

      KindredID: 10

      Case: M, 42Y0M, Indian

      DiseaseAssertion: VHL

      FamilyInfo: No relevant family history.

      CohortInfo: This retrospective study was conducted at Department of Endocrinology of a tertiary care health centre in Western India. Patients presented to our institute between 2008 and 2016 were included in the study. During the study period a total of 33 patients were suspected to have VHL syndrome based on clinical features among whom 31 patients were found to have mutation in VHL gene. All patients are of Asian Indian descent.

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

      CaseHPOFreeText: Unilateral pheochromocytoma.

      CaseNotHPOs: HP:0009711; HP:0001737; HP:0005584; HP:0030405; HP:0002668 (Retinal capillary hemangioma, Pancreatic cysts, Renal cell carcinoma, Pancreatic endocrine tumor, Paraganglioma)

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: p.L163F (c.487C>T)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: 480772, https://www.ncbi.nlm.nih.gov/clinvar/variation/480772/

      CAID: N/A

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: missense_variant;transition

      CivicName: L163F (c.487C>T)

      MultipleGeneVariants: N/A

    1. The Y156C mutation was found in a 55-year-old woman, but the mutation was absent in her clinically healthy son.

      PatientID: None (Proband)

      KindredID: ASP (Y156C)

      Case: F, 55Y0M, Hungarian

      DiseaseAssertion: VHL

      FamilyInfo: Mutation was absent in a clinically healthy son. Proband of this family presented with an apparently sporadic pheochromocytoma and the Y156C germline mutation of the VHL gene.

      CasePresentingHPOs: HP:0002666 (Pheochromocytoma)

      CaseHPOFreeText: Presented with an apparently sporadic unilateral pheochromocytoma. VHL phenotype noted as type 2C.

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: Clinical evaluation of the three patients indicated the absence of other VHL-related tumors.

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: p.Y156C (c.467A>G)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: 43600, https://www.ncbi.nlm.nih.gov/clinvar/variation/43600/

      CAID: N/A

      gnomAD: N/A

      VariantEvidence: Variant reported as Y156C and cDNA change was mapped to c.467A>G.

      MutationType: missense_variant;transition

      CivicName: Y156C (c.467A>G)

      MultipleGeneVariants: N/A

  3. Oct 2026
    1. PatientID: N/A

      KindredID: 401

      Case: Age unknown, Sex unknown, Ethnicity unknown

      DiseaseAssertion: assumed VHL

      FamilyInfo: Paper states: Germline, de novo (no clear confirmation)

      CasePresentingHPOs: HP:0009711 (retinal capillary hemangioma)

      CaseHPOFreeText: multiple bilateral retinal capillary hemangiomas

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: Yes (Specifically Supp. Table S2)

      Variant: p.F148* (c.443_455delinsA)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: stated as a p.F148fs (del/ins/FS), however stop_gained rather than frameshift is the protein result

      ClinVarID: N/A

      CAID: CA2573050544 https://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/by_caid?caid=CA2573050544

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: delins

      CivicName: F148* (c.443_455delinsA)

      MultipleGeneVariants: N/A

    2. PatientID: N/A

      KindredID: 442

      Case: Age unknown, Sex unknown, Ethnicity unknown

      DiseaseAssertion: assumed VHL

      FamilyInfo: Paper states: Germline, de novo (no clear confirmation)

      CasePresentingHPOs: HP:0005584; HP:0010797 (renal cell carcinoma, hemangioblastoma)

      CaseHPOFreeText: Bilateral RCC and a hemangioblastoma

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: Yes (Specifically Supp. Table S2)

      Variant: p.G144* (c.430G>T)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: 223208 https://www.ncbi.nlm.nih.gov/clinvar/variation/223208/

      CAID: N/A

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: stop_gained

      CivicName: G144* (c.430G>T)

      MultipleGeneVariants: N/A

    3. PatientID: N/A

      KindredID: 198

      Case: Age unknown, Sex unknown, Ethnicity unknown

      DiseaseAssertion: assumed VHL

      FamilyInfo: Paper states: Germline, de novo

      CasePresentingHPOs: HP:0010797 (hemangioblastoma)

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: Yes (Specifically Supp. Table S2)

      Variant: p.W117Cfs*42 (c.351del)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: paper states c.350delG which automaps to NM_000551.3:c.351delG

      ClinVarID: 223197 https://www.ncbi.nlm.nih.gov/clinvar/variation/223197/

      CAID: N/A

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: minus_1_frameshift_variant

      CivicName: W117fs (c.351del)

      MultipleGeneVariants: N/A

    1. PatientID: 4

      KindredID: 4

      Case: M, 55Y0M, Korean

      DiseaseAssertion: VHL

      FamilyInfo: No family history of VHL.

      CohortInfo: 26 Korean patients with more than one HAB in the CNS or eye, a single HAB in the CNS or retina plus a visceral manifestation (multiple renal, pancreatic or hepatic cysts, pheochromocytoma and RCC) and positive family history plus any one of the above manifestations.

      CasePresentingHPOs: HP:0010797 (Hemangioblastoma)

      CaseHPOFreeText: Multiple or bilateral CNS hemangioblastoma. Diagnosed with VHL Type 1.

      CaseNotHPOs: HP:0002666; HP:0009711; HP:0005584 (Pheochromocytoma, Retinal capillary hemangioma, Renal cell carcinoma)

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: p.E70K (c.208G>A)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: 43598, https://www.ncbi.nlm.nih.gov/clinvar/variation/43598/

      CAID: N/A

      gnomAD: 0.000004365, https://gnomad.broadinstitute.org/variant/3-10183739-G-A

      VariantEvidence: N/A

      MutationType: missense_variant;transition

      CivicName: E70K (c.208G>A)

      MultipleGeneVariants: N/A

    2. PatientID: 22

      KindredID: 22

      Case: F, 26Y0M, Korean

      DiseaseAssertion: VHL

      FamilyInfo: No family history of VHL.

      CohortInfo: 26 Korean patients with more than one HAB in the CNS or eye, a single HAB in the CNS or retina plus a visceral manifestation (multiple renal, pancreatic or hepatic cysts, pheochromocytoma and RCC) and positive family history plus any one of the above manifestations.

      CasePresentingHPOs: HP:0010797 (Hemangioblastoma)

      CaseHPOFreeText: Multiple or bilateral CNS hemangioblastoma. Other phenotypes presented but not specified (one or more of: pancreatic cyst or tumor, renal or hepatic cyst). Diagnosed with VHL Type 1.

      CaseNotHPOs: HP:0009711; HP:0005584; HP:0002666 (Retinal capillary hemangioma, Renal cell carcinoma, Pheochromocytoma)

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: p.L101R (c.302T>G)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: N/A

      CAID: CA351751004, https://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/by_canonicalid?canonicalid=CA351751004

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: missense_variant;transversion

      CivicName: L101R (c.302T>G)

      MultipleGeneVariants: N/A

    3. PatientID: 10

      KindredID: 10

      Case: F, 41Y0M, Korean

      DiseaseAssertion: VHL

      FamilyInfo: No family history of VHL.

      CohortInfo: 26 Korean patients with more than one HAB in the CNS or eye, a single HAB in the CNS or retina plus a visceral manifestation (multiple renal, pancreatic or hepatic cysts, pheochromocytoma and RCC) and positive family history plus any one of the above manifestations.

      CasePresentingHPOs: HP:0010797 (Hemangioblastoma)

      CaseHPOFreeText: CNS hemangioblastoma. Diagnosed with VHL Type 1.

      CaseNotHPOs: HP:0002666; HP:0009711; HP:0005584 (Pheochromocytoma, Retinal capillary hemangioma, Renal cell carcinoma)

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: p.E70K (c.208G>A)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: 43598, https://www.ncbi.nlm.nih.gov/clinvar/variation/43598/

      CAID: N/A

      gnomAD: 0.000004365, https://gnomad.broadinstitute.org/variant/3-10183739-G-A

      VariantEvidence: N/A

      MutationType: missense_variant;transition

      CivicName: E70K (c.208G>A)

      MultipleGeneVariants: N/A

    4. PatientID: 3

      KindredID: 3

      Case: M, 55Y0M, Korean

      DiseaseAssertion: VHL

      FamilyInfo: No family history of VHL.

      CohortInfo: 26 Korean patients with more than one HAB in the CNS or eye, a single HAB in the CNS or retina plus a visceral manifestation (multiple renal, pancreatic or hepatic cysts, pheochromocytoma and RCC) and positive family history plus any one of the above manifestations.

      CasePresentingHPOs: HP:0010797 (Hemangioblastoma)

      CaseHPOFreeText: Multiple or bilateral CNS hemangioblastoma. Diagnosed with VHL Type 1. Phenotypes revised from previous reports (see “PreviouslyPublished” section below for PMID).

      CaseNotHPOs: HP:0002666; HP:0009711; HP:0005584 (Pheochromocytoma, Retinal capillary hemangioma, Renal cell carcinoma)

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: 19270817

      SupplementalData: N/A

      Variant: p.E70K (c.208G>A)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: 43598, https://www.ncbi.nlm.nih.gov/clinvar/variation/43598/

      CAID: N/A

      gnomAD: 0.000004365, https://gnomad.broadinstitute.org/variant/3-10183739-G-A

      VariantEvidence: N/A

      MutationType: missense_variant;transition

      CivicName: E70K (c.208G>A)

      MultipleGeneVariants: N/A

    5. PatientID: 43

      KindredID: 43

      Case: M, 30Y0M, Korean

      DiseaseAssertion: VHL

      FamilyInfo: No family history of VHL.

      CohortInfo: 26 Korean patients with more than one HAB in the CNS or eye, a single HAB in the CNS or retina plus a visceral manifestation (multiple renal, pancreatic or hepatic cysts, pheochromocytoma and RCC) and positive family history plus any one of the above manifestations.

      CasePresentingHPOs: HP:0002666; HP:0009711 (Pheochromocytoma, Retinal capillary hemangioma)

      CaseHPOFreeText: Multiple or bilateral pheochromocytoma. Other phenotypes presented but not specified (one or more of: pancreatic cyst or tumor, renal or hepatic cyst). Diagnosed with VHL Type 2A. Phenotypes revised from previous reports (see “PreviouslyPublished” section below for PMID).

      CaseNotHPOs: HP:0010797; HP:0005584 (Hemangioblastoma, Renal cell carcinoma)

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: 19949673

      SupplementalData: N/A

      Variant: p.R167W (c.499C>T)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: 2218, https://www.ncbi.nlm.nih.gov/clinvar/variation/2218/

      CAID: N/A

      gnomAD: 0.000007954, https://gnomad.broadinstitute.org/variant/3-10191506-C-T

      VariantEvidence: N/A

      MutationType: missense_variant;transition

      CivicName: R167W (c.499C>T)

      MultipleGeneVariants: N/A

    6. PatientID: 9

      KindredID: 9

      Case: F, 16Y0M, Korean

      DiseaseAssertion: VHL

      FamilyInfo: No family history of VHL.

      CohortInfo: 26 Korean patients with more than one HAB in the CNS or eye, a single HAB in the CNS or retina plus a visceral manifestation (multiple renal, pancreatic or hepatic cysts, pheochromocytoma and RCC) and positive family history plus any one of the above manifestations.

      CasePresentingHPOs: HP:0009711 (Retinal capillary hemangioma)

      CaseHPOFreeText: Diagnosed with VHL Type 1.

      CaseNotHPOs: HP:0002666; HP:0005584; HP:0010797 (Pheochromocytoma, Renal cell carcinoma, Hemangioblastoma)

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: p.E70K (c.208G>A)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: 43598, https://www.ncbi.nlm.nih.gov/clinvar/variation/43598/

      CAID: N/A

      gnomAD: 0.000004365, https://gnomad.broadinstitute.org/variant/3-10183739-G-A

      VariantEvidence: N/A

      MutationType: missense_variant;transition

      CivicName: E70K (c.208G>A)

      MultipleGeneVariants: N/A

    1. Patient P8 In October 2019, visual impairment was diagnosed in a 14-year-old boy. BCVA was 20/20 and 20/640 in OD and OS, respectively. Four peripheral RCHs were detected in OD. In OS, multiple RCHs were present; the largest was located temporally, and it consisted in the coalescence of many RCHs. The visual impairment of OS was due to the severe exudative process which involved the macula. Moreover, FA revealed numerous microhemangioblastomas that could not be detected using other diagnostic techniques. Laser therapy was performed in OU, but vitreous hemorrhage occurred in OS. Therefore, three anti-VEGF IV (bevacizumab) and simultaneous transscleral cryotherapies were performed under general anesthesia. Many laser sessions were necessary to obtain regression of the RCHs. Further investigations revealed the presence of a cerebellar hemangioblastoma.

      PatientID: 8

      KindredID: 4

      Case: M, 14Y0M, Ethnicity Unknown

      DiseaseAssertion: VHL

      FamilyInfo: A family pedigree is provided in figure 1. The parents of patient 8 were molecularly tested and neither possessed the mutation; thus, the mutation was identified as de novo. Neither parent had VHL syndrome characterized by retinal capillary hemangiomas (RCHs).

      CasePresentingHPOs: HP:0006880; HP:0009711 (Cerebellar hemangioblastoma; Retinal capillary hemangioma)

      CaseHPOFreeText: In 2019, a 14-year-old boy was diagnosed with visual impairment, due to visual acuity of 20/20 in the right eye and 20/640 in the left eye. Four peripheral RCHs were detected in the right eye. The visual impairment of the left eye was due to the severe exudative process involving the macula. Moreover, numerous microhemangioblastomas were revealed by fluorescein angiography. Laser therapy was performed in both eyes, but vitreous hemorrhage occurred in the left eye. Bevacizumab was given three times, as well simultaneous cryotherapies were performed under general anesthesia. Many laser sessions were performed for regression of the RCHs to occur. Further testing revealed a cerebellar hemangioblastoma.

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: Patient did not have other known tumours.

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

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

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

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

      CAID: N/A

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: stop_gained

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

      MultipleGeneVariants: N/A

    1. The second patient, an incidental finding, was practically asymptomatic and had a de novo germline point mutation in the VHL gene (Arg167Trp).

      PatientID: 2

      KindredID: 2

      Case: M, 10Y6M, Ethnicity Unknown

      DiseaseAssertion: adrenal pheochromocytoma

      FamilyInfo: de novo mutation found: his parents were said to have tested negative for the mutation (neither parent had this R167W mutation). All other family history was negative.

      CasePresentingHPOs: HP:0006748 (adrenal pheochromocytoma)

      CaseHPOFreeText: this patient was described to be practically asymptomatic, with an incidental finding: Diagnosed with adrenal incidentaloma, he had intermittent abdominal pain for 6 months (beginning at age 10Y). CT scan showed a left adrenal solid tumor (3x3cm) with no calcifications; I-MIBG was normal; he underwent an adrenalectomy for this pheochromocytoma.

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: brain and spinal cord MRI, ophthal-moscopy, whole body CT scan and ultrasonography of the testes, showed no abnormalities.

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: p.R167W (c.499C>T)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: 2218, https://www.ncbi.nlm.nih.gov/clinvar/variation/2218/

      CAID: N/A

      gnomAD: 0.000007954, https://gnomad.broadinstitute.org/variant/3-10191506-C-T?dataset=gnomad_r2_1

      VariantEvidence: N/A

      MutationType: missense_variant;transition

      CivicName: R167W (c.499C>T)

      MultipleGeneVariants: N/A

    1. 1 15 c.525C>A p.Tyr175X x x Likely de novo Father and siblings -

      PatientID: 1

      KindredID: 1

      Case: Sex Unknown, 15Y0M, Ethnicity Unknown

      DiseaseAssertion: VHL

      FamilyInfo: Variant noted as likely de novo (i.e. “parents were unaffected even if one or both parents were not available (n/a) for genetic testing”). Father and siblings were analyzed but no details were provided. Based on likely de novo assertion, it’s assumed that father and siblings were negative for this mutation.

      CasePresentingHPOs: HP:0010797; HP:0000107 (Hemangioblastoma, Renal cyst)

      CaseHPOFreeText: CNS hemangioblastoma and renal cystic lesion.

      CaseNotHPOs: HP:0002666; HP:0006770; HP:0001732; HP:0009711 (Pheochromocytoma, Clear cell renal cell carcinoma, Abnormality of the pancreas, Retinal capillary hemangioma)

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: Table S1, S2 and S3

      Variant: p.Y175* (c.525C>A)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: 1298905, https://www.ncbi.nlm.nih.gov/clinvar/variation/1298905/

      CAID: N/A

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: missense_variant;transversion; stop_gained

      CivicName: Y175* (c.525C>A)

      MultipleGeneVariants: N/A

    2. 80 23 c.422_440del19 p.Asn141IlefsX12 x x De novo Parents -

      PatientID: 80

      KindredID: 80

      Case: Sex Unknown, 23Y0M, Ethnicity Unknown

      DiseaseAssertion: VHL

      FamilyInfo: Parents were negative for the mutation. No phenotype details are noted for these family members.

      CasePresentingHPOs: HP:0010797; HP:0000107 (Hemangioblastoma, Renal cyst)

      CaseHPOFreeText: CNS hemangioblastoma and renal cystic lesion.

      CaseNotHPOs: HP:0002666; HP:0006770; HP:0001732; HP:0009711 (Pheochromocytoma, Clear cell renal cell carcinoma, Abnormality of the pancreas, Retinal capillary hemangioma)

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: Table S1, S2 and S3

      Variant: p.N141Ifs*12 (c.422_440del)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: N/A

      CAID: CA16621933, https://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/allele?hgvsOrDescriptor=NM_000551.3%3Ac.422_440del

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: deletion; minus_1_frameshift_variant

      CivicName: N141fs (c.422_440del)

      MultipleGeneVariants: N/A

    1. Clinical case reportA 32-year-old male presented with hematuria. Ultrasound demonstrated multiple renal cysts and the initial diagnosis was polycystic kidney disease. However, the cysts enlarged during a surveillance period of one year, leading to computed tomography imaging demonstrating a locally advanced right renal tumor, and two tumors in the left kidney (Figure 1). Further investigation revealed capillary retinal angiomas and hemangiomas of the brain and spine typical of VHL disease, and he was diagnosed with a de novo, germline nonsense mutation in exon 3 of the VHL gene. At the age of 33, the patient underwent a radical right nephrectomy; histopathological examination confirmed a single stage 3, Fuhrman grade 3 ccRCC (pT3aN0M0). Six months later, there was progression in the left kidney and he was treated with partial left nephrectomy to remove both tumors. Both were stage 1 ccRCCs with a maximum Fuhrman grade of 2 (pT1aN0M0). At the time of this report, the patient remains in complete remission.

      PatientID: None

      KindredID: 1

      Case: M, 32Y0M, Ethnicity Unknown

      DiseaseAssertion: VHL

      FamilyInfo: N/A

      CasePresentingHPOs: HP:0000790, HP:0009711, HP:0000107, HP:0009713, HP:0010797, HP:0006770 (hematuria, retinal capillary hemangioma, renal cyst, spinal hemangioblastoma, hemangioblastoma, clear cell renal cell carcinoma)

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: p.R120*(c.358A>T)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: N/A

      CAID: CA351753732 http://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/allele?hgvsOrDescriptor=NM_000551.3%3Ac.358A%3ET

      gnomAD: N/A

      VariantEvidence: All tumor regions also displayed 3p LOH.

      MutationType: stop_gained

      CivicName: R120*(c.358A>T)

      MultipleGeneVariants: Somatic, VHL, not described

    1. We report on a boy presenting at age 8 years with an isolated benign phaeochromocytoma of the left adrenal. Three years later a second adrenal phaeochromocytoma was diagnosed on the right side and removed. His family history was negative

      PatientID: 1 (case)

      KindredID: 1

      Case: M, 18Y0M, Ethnicity Unknown

      DiseaseAssertion: pheochromocytoma

      FamilyInfo: Negative family history of VHL and pheochromocytoma - mutation analyses of the parents and sister (with confirmed paternity) revealed normal findings, suggesting de novo.

      CasePresentingHPOs: HP:0002666 (pheochromocytoma)

      CaseHPOFreeText: At 8Y the boy had ??arterial hypertension, vision impairment, elevated urinary epinephrine, norepinephrine and vanillylmandelic acid levels, revieling a left adrenal tumor (pheochromocytoma). This was removed. 3 years later (11Y old) a second right adrenal pheochromocytoma was removed.

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: At 18Y, MRI and tests showed no further VHL manifestations: No abnormalities in brain and spinal chord, ophthalmoscopy, abdominal tests, and ultrasonography of the testes

      CasePreviousTesting: RET

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: p.R161Q (c.482G>A)

      LegacyVariant: Glu161Arg (c.695G>A)

      CaseProblemVariantFreeText: Stated that sequence analysis of fragments revealed a base transversion in nucleotide 695 of G to A, which causes a substitution of glutamine for arginine in codon 161, Gly161Arg. Likely meaning (NM_000551.3) p.R161Q (c.482G>A)

      ClinVarID: 182983 https://www.ncbi.nlm.nih.gov/clinvar/variation/182983/

      CAID: N/A

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: missense_variant;transition

      CivicName: R161Q (c.482G>A)

      MultipleGeneVariants: N/A

    1. PatientID: None

      KindredID: 45

      Case: M, 13Y0M, Spanish

      DiseaseAssertion: VHL

      FamilyInfo: No familial antecedents and no known familial tumors.

      CohortInfo: Probands belonging to 18 unrelated Spanish VHL families carrying germline VHL deletions.

      CasePresentingHPOs: HP:0006880; HP:0006770; HP:0000107; HP:0002666; HP:0010797; HP:0030424 (Cerebellar hemangioblastoma, Clear cell renal cell carcinoma, Renal cyst, Pheochromocytoma, Hemangioblastoma, Epididymal cyst)

      CaseHPOFreeText: Epididymal cyst was noted as “eH” instead of “eC” in Table 2. Given that “eH” was not explained in the footnotes of the Table as were all other phenotypes; “eH” was taken to be a typo intended to be “eC”.

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: 14722919

      SupplementalData: N/A

      Variant: Exon 1-2 Deletion (c.1-?_463+?del)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: N/A

      CAID: N/A

      gnomAD: N/A

      VariantEvidence: Germline HSPC300 retention. Study provides evidence to show that loss of HSPC300 highly correlates with the absence of ccRCC in VHL patients.

      MutationType: exon_loss_variant

      CivicName: Exon 1-2 Deletion

      MultipleGeneVariants: N/A

    1. A 33-year-old man was admitted to Zhongda Hospital, Southeast University (Nanjing, China) with a two-month history of progressive right flank pain, accompanied by a one-month history of recurrent painless gross hematuria. The patient's previous medical history included urological surgery at the age of 23 years due to an epididymal cyst and an ophthalmologic surgery at 26 years of age for retinal detachment resulting from bilateral retinal angiomatosis, which was performed at Shuyang People's Hospital (Suqian, China). At the time of the present study, the patient had two children, a son and a daughter, who were in good health; his father, aged 65 years, and his mother, aged 62 years, were also in good health. The patient's two brothers, aged 40 and 37 years old, with one child each were all are in good health.

      PatientID: N/A

      KindredID: 1

      Case: M, 33Y0M, Chinese

      DiseaseAssertion: VHL

      FamilyInfo: Genetic analysis of the patient's parents and brothers, who were unaffected, confirmed a diagnosis of de novo VHL disease.

      CasePresentingHPOs: HP:0030424, HP:0009711, HP:0005584, HP:0006770, HP:0001737, HP:0000107 (epididymal cyst, retinal capillary hemangioma, renal cell carcinoma, clear cell renal cell carcinoma, pancreatic cysts, renal cyst)

      CaseHPOFreeText: He was admitted to the hospital with a two-month history of progressive right flank pain, accompanied by a one-month history of recurrent painless gross hematuria. The patient's previous medical history included urological surgery at the age of 23 years due to an epididymal cyst and an ophthalmologic surgery at 26 years of age for retinal detachment resulting from bilateral retinal angiomatosis. Contrast-enhanced computed tomography (CT) scanning and angiography were used to detect the presence of quasi-circular enhancing lesions in the middle of the left kidney and large irregular enhancing lesions in the right kidney, extending into the vena cava, that formed an embolus. In addition, multiple cysts in the pancreas and kidney were detected radiologically. The patient underwent a radical nephrectomy with an embolectomy of the right kidney for treatment of T3b-stage renal cell carcinoma. After three months, he successfully underwent laparoscopic nephron-sparing surgery (NSS) of the left kidney. Histological analysis of the renal tissue revealed clear cell carcinomas.

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: p.S65W(c.194C>G)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: 43597 https://www.ncbi.nlm.nih.gov/clinvar/variation/43597/

      CAID: CA020099 http://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/allele?hgvsOrDescriptor=NM_000551.3%3Ac.194C%3EG

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: missense_variant;transversion

      CivicName:S65W(c.194C>G)

      MultipleGeneVariants: N/A

    1. Methods: We performed a fundus examination and fluorescein and indocyanine green (ICG) angiography in both eyes of a young woman affected by VHL with bilateral pheochromocytoma, retinal angioma, retinal microaneurysms and unusual alterations of the deep retinal layers. A molecular analysis of the VHL gene was carried out.

      PatientID: 1 (case)

      KindredID: 1

      Case: F, 25Y0M, Ethnicity Unknown

      DiseaseAssertion: VHL

      FamilyInfo: Not significant - the paper states that the parents and siblings were negative for the mutation (indicating de novo).

      CasePresentingHPOs: HP:0002666; HP:0009711; HP:0000479; HP:0012045 (pheochromocytoma, retinal capillary hemangioma, abnormal retinal morphology, retinal flecks)

      CaseHPOFreeText: patient was referred for eye exam as part of a VHL screening program at 25Y. She has been diagnosed with bilateral pheochromocytoma at the age of 14 after an episode of acute hypertensive encephalopathy. Ophthalmoscopy disclosed in her right eye a small retinal hemangioma (1 disc diameter wide) along with feeder vessels in the mid-periphery and multiple, small, whitish, dome-shaped lesions scattered in the deeper layers of the posterior retina. Fluorescein and indocyanine green angiography confirmed the presence of the retinal hemangioma; multiple window-defects were also seen at the posterior pole and pericentral retina and hypofluorescent dots. (Unusual alterations of the deep retinal layers).

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: p.T157I (c.470C>T)

      LegacyVariant: p.T157I (c.683C>T)

      CaseProblemVariantFreeText: N/A

      ClinVarID: 223223 https://www.ncbi.nlm.nih.gov/clinvar/variation/223223/

      CAID: N/A

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: missense_variant;transition

      CivicName: T157I (c.470C>T)

      MultipleGeneVariants: N/A

    1. In patient II/1 (Figure 1) the 8684 C->T substitution causing the nonsense R161X mutation in the putative protein was found

      PatientID: II/1

      KindredID: 1

      Case: F, 33Y0M, Italian

      DiseaseAssertion: VHL

      FamilyInfo: A patient was found to have a mutation in the VHL gene (R161* (c.481C>T)), this patients parents were tested for the same mutation in VHL, but testing revealed no VHL gene mutation. Pedigree: see Figure 1.

      CasePresentingHPOs: HP:0006880 (cerebellar hemangioblastoma)

      CaseHPOFreeText: developed cerebellar hemangioblastoma at age 33

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: p.R161* (c.481C>T)

      LegacyVariant: R161X (8684C>T)

      ClinVar: 2217 https://www.ncbi.nlm.nih.gov/clinvar/variation/2217/

      CAID: N/A

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: stop_gained

      CivicName: R161* (c.481C>T)

      MultipleGeneVariants: N/A

    1. GroupID/ KindredID: F9

      Case: Sex unknown, 20Y0M, Spanish

      DiseaseAssertion: assumed VHL

      FamilyInfo: None. Microsatellites were used to exclude nonpaternity, and the de novo character of the mutation was demonstrated in this patient. Paper says its confirmed however only discuss nonpaternity.

      CasePresentingHPOs: HP:0009711; HP:0006880; HP:0001737 (retinal capillary hemangioma, cerebellar hemangioblastoma, pancreatic cysts)

      CaseHPOFreeText: Cerebellar hemangioblastoma was found with multiple lesions. Age of onset is 20Y0M.

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: p.R161* (c.481C>T)

      CaseProblemVariantFreeText: N/A

      LegacyVariant: N/A

      ClinVarID: 2217 https://www.ncbi.nlm.nih.gov/clinvar/variation/2217/

      CAID: N/A

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: stop_gained

      CivicName: R161* (c.481C>T)

      MultipleGeneVariants: N/A

    1. GroupID/ KindredID: VHL 31

      Case: Sex unknown, Age unknown, Italian

      DiseaseAssertion: assumed VHL

      FamilyInfo: One patient with the given mutation is stated to belong to VHL family 31 - this was said to be not inherited from either parent, indicating a de novo germline mutation.

      CasePresentingHPOs: HP:0009711; HP:0010797; HP:0000107; HP:0005584; HP:0001737; HP:0009715 (retinal capillary hemangioma, hemangioblastoma, renal cyst, renal cell carcinoma, pancreatic cysts, papillary cystadenoma of the epididymis)

      CaseHPOFreeText: N/A

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: c.464-2A>G

      CaseProblemVariantFreeText: N/A

      LegacyVariant: c.677-2A>G

      ClinVarID: 223222 https://www.ncbi.nlm.nih.gov/clinvar/variation/223222/

      CAID: N/A

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: splice_site_variant

      CivicName: Splice Site (c.464-2A>G)

      MultipleGeneVariants: N/A

    1. The patient was heterozygous for the novel c.163 G > T (p.55GluX) amber nonsense mutation

      PatientID: 1

      KindredID: 1 (A)

      Case: M, 15Y0M, Hungarian

      DiseaseAssertion: VHL

      FamilyInfo: Both parents were healthy with no display of any mutations in the VHL gene, indicating a de novo mutation.

      CasePresentingHPOs: HP:0006770; HP:0009711 (clear cell renal cell carcinoma, retinal capillary hemangioma)

      CaseHPOFreeText: Patient developed bilateral retinal angioma (retinal capillary hemangioma) and had serious retinal detachment.

      CaseNotHPOs: HP:0010797; HP:0002666 (hemangioblastoma, pheochromocytoma)

      CaseNotHPOFreeText: MRI of the craniospinal axis could not detect any alterations. No deviation from normal values was observed in the laboratory test.

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: p.E55* (c.163G>T)

      CaseProblemVariantFreeText: N/A

      LegacyVariant: N/A

      ClinVar: N/A

      CAID: CA351748495 http://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/allele?hgvsOrDescriptor=NM_000551.3%3Ac.163G%3ET

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: missense_variant; transversion

      CivicName: E55* (c.163G>T)

      MultipleGeneVariants: N/A

    1. 2. Materials and methods2.1. PatientThe 32-year-old male patient was admitted to Xiangya Hospital in 2006 and presented with progressive back and neck pain, and numbness and weakness of both legs which had continued for 1 month followed by fecal and urinary retention for 5 days. The MRI (1.5 Tesla) of the brain and entire spinal cord showed multiple lesions in the cerebellum, brain stem, and spinal cord, which were obviously enhanced and highly suggestive of hemangioblastomas (Fig. 1a–e). Subsequent evaluation, by MRI, of the abdomen revealed a solid kidney tumor (Fig. 1f). He underwent surgical resection for hemangioblastomas of T10 and T12 of the spinal cord, which appeared bright red at surgery. The pathological examination of the tissues showed many small blood vessels, most of which were a capillary plexus. Vascular endothelial cells were flat and distributed within a large number of stromal cells. Some of the vascular endothelial cells formed solid masses and cords. Between the capillary plexus, various forms of stromal cells were found, including nest-like or sheet arrangements with hyperchromatic nuclei, rich cytoplasm, rich lipid vacuoles and rare or no mitoses. Some foam cells and adipose-like cells were also found. Immunohistochemistry of the biopsied tissues from the lesions in the spinal cord were negative on immunostaining (–) for glial fibrillary acidic protein (GFAP), CD68, cytokinin (CK)-pan and epithelial membrane antigen (EMA), but stained positive (+) for factor 8 related antigen (F8RAg). Vascular endothelial cells were F8RAg(+) but stromal cells were F8RAg(–). Vascular endothelial cells and stromal cells were all immunonegative for GFAP, EMA, CK-pan, and CD68 (Fig. 1g, h). The patients’ symptoms resolved after surgery. At 5-year follow-up his condition did not recur or deteriorate, but active surveillance was continued.12Download : Download high-res image (1MB)Download : Download full-size imageFig. 1. Main clinical manifestations of von Hippel-Lindau (VHL) disease. (a) Sagittal T1-weighted MRI of the thoracic spinal cord showing two brightly enhancing nodular lesions with clear boundaries at T10 and T12 (arrows). (b) Sagittal T1-weighted MRI of the cervical spinal cord showing two brightly enhancing nodular lesions with clear boundaries at C5 and C6 (arrows). (c) Sagittal T1-weighted MRI of the cervical spinal cord showing a brightly enhancing nodular lesion with a clear boundary at C2 (arrow). (d) Sagittal T1-weighted MRI of the cranial–cervical region showing three brightly enhancing round lesions with clear boundaries at the posterior of the medulla oblongata, superior spinal cord and basilar part of the pons (arrows). (e) Axial T1-weighted MRI of the brain showing two brightly enhancing nodular lesions with clear boundaries at the posterior of the medulla oblongata and the right cerebellar hemisphere (arrows). (f) Sagittal T1-weighted MRI of the kidney showing the small (1.2 cm × 0.6 cm) enhancing nodular lesion (arrow). (g) Histopathological examination of the lesions at T10 and T12 in the spinal cord of the patient with VHL (hematoxylin and eosin stain, ×400). (h) Immunohistochemistry of the biopsied tissue from the lesions at T10 and T12 in the spinal cord of the patient with VHL (factor 8 related antigen stain, ×400).After genetic counseling, all family members of the patient (his parents, sister, son, sister’s son, brother, and brother’s son) were recruited into this study. His 66-year-old father and 63-year-old mother were both in good health without clinical symptoms of VHL. They did not undergo a whole-body examination, but all other family members underwent clinical examination, including ophthalmoscopy, MRI of the CNS, and ultrasonography of the abdomen, to exclude the disease. Informed consent was obtained from all individuals before their participation in the study.

      PatientID: 1

      KindredID: 1

      Case: M, 39Y0M, Ethnicity Unknown

      DiseaseAssertion: VHL

      FamilyInfo: No family history. All 7 of his other family members (his parents, sister, son, sister’s son, brother, and brother’s son) were sequenced and no mutation were found. Additionally, all were healthy members. Suggestive of de novo due to no abnormal changes in the VHL gene of either parent.

      CasePresentingHPOs: HP:0010797; HP:0009713; HP:0006880; HP:0009726 (hemangioblastoma, spinal hemangioblastoma, cerebellar hemangioblastoma, renal neoplasm)

      CaseHPOFreeText: At 32Y this patient presented with progressive back and neck pain and numbness. Patient developed multiple CNS hemangioblastomas (multiple lesions in the cerebellum, brain stem, and spinal cord). Subsequent evaluation of the abdomen revealed a solid kidney tumor (visceral tumor).

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: p.F76del (c.227_229delTCT)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: N/A

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

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: inframe_deletion

      CivicName: F76del (c.227_229delTCT)

      MultipleGeneVariants: N/A

    1. The concurrence of different types of brain tumors is extremely rare. We present a 29-yearold women with brainstem hemangioblastoma, posterior fossa meningiomas and a pituitary spaceoccupying lesion causing hyperprolactinemia.Despite multiple primary intracranial tumors,through systemic work-up, no other manifestation related to von Hippel-Lindau(VHL) disease was found. Complete resection of the brainstem hemangioblastoma and posterior fossa meningiomas was achieved in one single operation via a sub-occipital posterior combined with retrosigmoid approach. The patient was discharged without obvious postoperative complications

      PatientID: 1

      KindredID: 1

      Case: F, 29Y0M, Ethnicity Unknown

      DiseaseAssertion: assumed VHL

      FamilyInfo: Negative family history, suggesting a de novo mutation.

      CasePresentingHPOs: HP:0010797; HP:0002858; HP:0012503; HP:0000141 (hemangioblastoma; meningioma; pituitary lesion; amenorrhea)

      CaseHPOFreeText: 1-year history of amenorrhea, she was found to have a brainstem hemangioblastoma, posterior fossa meningiomas and a pituitary spaceoccupying lesion causing hyperprolactinemia. Complete resection of the brainstem hemangioblastoma and posterior fossa meningiomas was achieved in one single operation via a sub-occipital posterior combined with retrosigmoid approach. The patient was later discharged without obvious postoperative complications.

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: Partial deletion of Exon 1

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: N/A

      CAID: N/A

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: deletion

      CivicName: N/A

      MultipleGeneVariants: N/A

    1. Table 2

      Case#: Cz25, Italy (Calabria)

      DiseaseAssertion: Hemophilia A

      FamilyInfo: Sporadic

      ParentalTesting: NA

      CasePresentingHPOs: NA

      CaseHPOFreeText: FVII:C 4%

      CasePreviousTesting: Polymerase chain reaction (PCR) analysis, Long PCR for detecting the intron 22 inversion was performed, Direct cycle sequence analysis using the Taq dye-deoxy terminator method

      Gene: F8

      Variant: NM_000132.3:c.1538-18G>A

      ClinVar: 811357 https://www.ncbi.nlm.nih.gov/clinvar/variation/811357/

      CAID: CA873354114

      gnomAD: Not reported

    2. Table 1

      Case#: Cz6, Italy (Calabria)

      DiseaseAssertion: Hemophilia A

      FamilyInfo: Sporadic

      ParentalTesting: NA

      CasePresentingHPOs: NA

      CaseHPOFreeText: FVII:C <1%

      CasePreviousTesting: Polymerase chain reaction (PCR) analysis, Long PCR for detecting the intron 22 inversion was performed, Direct cycle sequence analysis using the Taq dye-deoxy terminator method

      Gene: F8

      Variant: NM_000132.3(F8):c.4156C>T (p.Gln1386Ter)

      ClinVar: NA

      CAID: CA414891965

      gnomAD: Not reported

    3. Table 1

      Case#: Cz7, Italy (Calabria)

      DiseaseAssertion: Hemophilia A

      FamilyInfo: Sporadic

      ParentalTesting: NA

      CasePresentingHPOs: NA

      CaseHPOFreeText: FVII:C <1%

      CasePreviousTesting: Polymerase chain reaction (PCR) analysis, Long PCR for detecting the intron 22 inversion was performed, Direct cycle sequence analysis using the Taq dye-deoxy terminator method

      Gene: F8

      Variant: NM_000132.3(F8):c.5143C>T (p.Arg1715Ter)

      ClinVar: 10267 https://www.ncbi.nlm.nih.gov/clinvar/variation/10267/

      CAID: CA255155

      gnomAD: Not reported

    4. Table 2

      Case#: Cz16, Italy (Calabria)

      DiseaseAssertion: Hemophilia A

      FamilyInfo: Sporadic

      ParentalTesting: NA

      CasePresentingHPOs: NA

      CaseHPOFreeText: FVII:C 4%

      CasePreviousTesting: Polymerase chain reaction (PCR) analysis, Long PCR for detecting the intron 22 inversion was performed, Direct cycle sequence analysis using the Taq dye-deoxy terminator method

      Gene: F8

      Variant: NM_000132.3:c.1538-18G>A

      ClinVar: 811357 https://www.ncbi.nlm.nih.gov/clinvar/variation/811357/

      CAID: CA873354114

      gnomAD: Not reported

    5. Table 2

      Case#: Cz24, Italy (Calabria)

      DiseaseAssertion: Hemophilia A

      FamilyInfo: Sporadic

      ParentalTesting: NA

      CasePresentingHPOs: NA

      CaseHPOFreeText: FVII:C 4%

      CasePreviousTesting: Polymerase chain reaction (PCR) analysis, Long PCR for detecting the intron 22 inversion was performed, Direct cycle sequence analysis using the Taq dye-deoxy terminator method

      Gene: F8

      Variant: NM_000132.3:c.1538-18G>A

      ClinVar: 811357 https://www.ncbi.nlm.nih.gov/clinvar/variation/811357/

      CAID: CA873354114

      gnomAD: Not reported

    6. Table 1

      Case#: Cz29, Italy (Calabria)

      DiseaseAssertion: Hemophilia A

      FamilyInfo: Sporadic

      ParentalTesting: NA

      CasePresentingHPOs: NA

      CaseHPOFreeText: FVII:C <1%

      CasePreviousTesting: Polymerase chain reaction (PCR) analysis, Long PCR for detecting the intron 22 inversion was performed, Direct cycle sequence analysis using the Taq dye-deoxy terminator method

      Gene: F8

      Variant: F8, IVS22 INV

      ClinVar: 10150 https://www.ncbi.nlm.nih.gov/clinvar/variation/10150/

      CAID: NA

      gnomAD: Not reported

    7. Table 1

      Case#: Cz12, Italy (Calabria)

      DiseaseAssertion: Hemophilia A

      FamilyInfo: Sporadic

      ParentalTesting: NA

      CasePresentingHPOs: NA

      CaseHPOFreeText: FVII:C <1%

      CasePreviousTesting: Polymerase chain reaction (PCR) analysis, Long PCR for detecting the intron 22 inversion was performed, Direct cycle sequence analysis using the Taq dye-deoxy terminator method

      Gene: F8

      Variant: NM_000132.3(F8):c.5953C>T (p.Arg1985Ter)

      ClinVar: 10300 https://www.ncbi.nlm.nih.gov/clinvar/variation/10300/

      CAID: CA255191

      gnomAD: Not reported

    8. Table 2

      Case#: Cz26, Italy (Calabria)

      DiseaseAssertion: Hemophilia A

      FamilyInfo: Inherited

      ParentalTesting: NA

      CasePresentingHPOs: NA

      CaseHPOFreeText: FVII:C 1.5%

      CasePreviousTesting: Polymerase chain reaction (PCR) analysis, Long PCR for detecting the intron 22 inversion was performed, Direct cycle sequence analysis using the Taq dye-deoxy terminator method

      Gene: F8

      Variant: NM_000132.3:c.1538-18G>A

      ClinVar: 811357 https://www.ncbi.nlm.nih.gov/clinvar/variation/811357/

      CAID: CA873354114

      gnomAD: Not reported

    9. Table 2

      Case#: Cz23, Italy (Calabria)

      DiseaseAssertion: Hemophilia A

      FamilyInfo: Sporadic

      ParentalTesting: NA

      CasePresentingHPOs: NA

      CaseHPOFreeText: FVII:C 4%

      CasePreviousTesting: Polymerase chain reaction (PCR) analysis, Long PCR for detecting the intron 22 inversion was performed, Direct cycle sequence analysis using the Taq dye-deoxy terminator method

      Gene: F8

      Variant: NM_000132.3:c.1538-18G>A

      ClinVar: 811357 https://www.ncbi.nlm.nih.gov/clinvar/variation/811357/

      CAID: CA873354114

      gnomAD: Not reported

    1. Across 2,384 individuals with ASD, we identified 1,418 missense variants affecting 1,269 unique genes and annotated the impact of the variants using evolutionary action scores (Table S1)

      Case#: ProbandID:14248

      DiseaseAssertion: autism spectrum disorder

      FamilyInfo: n/a

      ParentalGenotype: this variant was asserted to be de novo.

      CasePresentingHPO: n/a

      PlateletAggregation: n/a

      CaseHPOFreeText: n/a

      CaseNotHPOs: n/a

      CaseNotHPOFreeText: n/a

      ProteinExpression: n/a

      CasePreviousTesting: n/a

      Gene: ITGA2B

      Variant: M1018T

      HGVS: NM_000419.3:c.3053T>C

      ClinVar: Not reported

      CAID: CA399788190

      gnomAD: not found in v4.1.0

    1. PatientID: 19

      KindredID: 9

      Case: F, 13Y0M, Indian

      DiseaseAssertion: VHL

      FamilyInfo: No relevant family history.

      CohortInfo: This retrospective study was conducted at Department of Endocrinology of a tertiary care health centre in Western India. Patients presented to our institute between 2008 and 2016 were included in the study. During the study period a total of 33 patients were suspected to have VHL syndrome based on clinical features among whom 31 patients were found to have mutation in VHL gene. All patients are of Asian Indian descent.

      CasePresentingHPOs: HP:0002666 (Pheochromocytoma)

      CaseHPOFreeText: Bilateral pheochromocytoma.

      CaseNotHPOs: HP:0009711; HP:0010797; HP:0001737; HP:0005584; HP:0030405; HP:0002668 (Retinal capillary hemangioma, Hemangioblastoma, Pancreatic cysts, Renal cell carcinoma, Pancreatic endocrine tumor, Paraganglioma)

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: p.R167Q (c.500G>A)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: 2216, https://www.ncbi.nlm.nih.gov/clinvar/variation/2216/

      CAID: N/A

      gnomAD: 0.000003977, https://gnomad.broadinstitute.org/variant/3-10191507-G-A

      VariantEvidence: N/A

      MutationType: missense_variant;transition

      CivicName: R167Q (c.500G>A)

      MultipleGeneVariants: N/A

    1. This case concerns a 35-year-old woman referred to our Gastroenterology Department with long-standing dyspepsia and pancreatic cysts detected by ultrasound examination. There were no other symptoms, such as abdominal pain, weight loss, visual or hearing changes, headache or urinary complaints. The past medical and family histories were not of significance. There were no abnormal findings on examination.The patient underwent an abdominal computed tomography (CT) scan (Figure ​(Figure1),1), which showed an enlargement of the pancreas, especially in the cephalic region, with heterogeneous density due to the presence of multiple hypodense nodules dispersed throughout the parenchyma. The majority of these lesions were small, but one larger contrast-enhancing lesion of 22 mm was present in the uncinate process.Open in a separate windowFigure 1Computed tomography abdominal scan. A: Small cystic lesions dispersed throughout the pancreas; B: The largest lesion.Given the findings of the CT scan, we performed an abdominal magnetic resonance imaging (MRI) (Figure ​(Figure2),2), which revealed several cysts that had a high signal intensity on T2 weighted images.Open in a separate windowFigure 2Magnetic resonance imaging. Cyst lesions are bright on T2-weighted images.The patient underwent endosonography that confirmed the presence of multiple simple cysts throughout the entirety of the pancreas. The majority of the cysts were less than 1 cm in diameter, but two cysts were larger than 1 cm. One of the larger cysts was 16 mm in diameter and was located at the isthmus-body transition. This cyst and did not communicate with the main pancreatic duct and was aspirated. The content had a serous appearance, and cytological analysis revealed amorphous material, few erythrocytes and inflammatory cells (Figure ​(Figure33).Open in a separate windowFigure 3Endosonography. A, B show a large cyst of 16 mm in diameter without communication or dilatation of the pancreatic duct; C: Demonstrates aspiration of the cyst; D: Demonstrates its appearance after total aspiration.The largest cyst was 23 mm in diameter and was located in the head of the pancreas. The cyst had a honeycomb appearance characteristic of serous cystadenomas (Figure ​(Figure4A).4A). The cytology did not show evidence of cellular atypia (Figure ​(Figure4B).4B). The carninoembryonic antigen was < 0.6 ng/dL, and the amylase in the cystic content was 135 U/L.Open in a separate windowFigure 4The largest cyst was 23 mm in diameter and was located in the head of the pancreas. A: Endosonography. Cyst with a honeycomb appearance; B: Cytology (papanicolaou stain, × 100). Benign pancreatic cysts.The endosonography also showed cysts in the left kidney and in the spleen (Figure ​(Figure5).5). The findings described were compatible with simple cysts and pancreatic serous cystadenomas and provided an indication for genetic testing for VHL. The sequencing of the VHL gene revealed one pathogenic heterozygous mutation in exon 1 (c.269A > T), confirming the diagnosis of VHL disease.Open in a separate windowFigure 5Endosonography. A: A cyst in the renal cortex; B: A cyst in the spleen.The patient underwent a MRI of the brain and entire spine and no hemangioblastomas were detected. The abdominal MRI scan excluded renal carcinoma. The plasma and urinary catecholamines and the urinary vanilmandelic acid were normal, excluding pheocromocytoma. The patient was also referred for examination of the retina and ear, nose and throat, including audiometry. There were no abnormal findings, which excluded angiomas of the retina and endolymphatic sac tumors, respectively.

      PatientID: None

      KindredID: 1

      Case: F, 35Y0M, Ethnicity Unknown

      DiseaseAssertion: VHL

      FamilyInfo: Her family was genetically tested, and the same mutation was found in her 7 year-old daughter. Assumed de novo.

      CasePresentingHPOs: HP:0410281; HP:0001737; HP:0005562; HP:0030423 (Dyspepsia, Pancreatic cysts, Multiple renal cysts, Splenic cyst)

      CaseHPOFreeText: Admitted with long-standing dyspepsia and pancreatic cysts detected by ultrasound examination. There were no other symptoms, such as abdominal pain, weight loss, visual or hearing changes, headache or urinary complaints. The past medical and family histories were not of significance. There were no abnormal findings on examination.CT scan showed an enlargement of the pancreas, especially in the cephalic region, with heterogeneous density due to the presence of multiple hypodense nodules dispersed throughout the parenchyma. Abdominal MRI revealed several cysts. Endosonography that confirmed the presence of multiple simple cysts throughout the entirety of the pancreas as well as cysts in the left kidney and in the spleen. The findings described were compatible with simple cysts and pancreatic serous cystadenomas.

      CaseNotHPOs: HP:0006880; HP:0009711; HP:0009713; HP:0005584; HP:0002666; HP:0030393 (Cerebellar hemangioblastoma, Retinal capillary hemangioma, Spinal hemangioblastoma, Renal cell carcinoma, Pheochromocytoma, Endolymphatic sac tumor)

      CaseNotHPOFreeText: MRI of the brain and entire spine and no hemangioblastomas were detected. Abdominal MRI scan excluded renal carcinoma.The plasma and urinary catecholamines and the urinary vanilmandelic acid were normal, excluding pheochromocytoma. Examination of the retina and ear, nose and throat, including audiometry excluded angiomas of the retina and endolymphatic sac tumors, respectively.

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: p.N90I (c.269A>T)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: 223172, https://www.ncbi.nlm.nih.gov/clinvar/variation/223172/

      CAID: N/A

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: missense_variant;transversion

      CivicName: N90I (c.269A>T)

      MultipleGeneVariants: N/A

    1. A previously healthy 10-year-old girl presented with occasional routine blood pressure measurements by her pediatrician above the 99th percentile for her age, sex, and height. She had noted mild hand edema over the previous days and reported recent nocturia. She was taking no medications. Family history was unremarkable. The physical examination was without significant findings other than an elevated blood pressure of 139/113 mm Hg. Urine tests showed boderline moderate albuminuria (albumin-creatinine ratio of 50 mg/g). There was no hematuria.On ultrasound, kidney size and parenchyma were unremarkable but an increased flow rate of the left renal artery in color duplex sonography was detected (systolic flow rate: right, 100 cm/s; left, 300 cm/s [age-adjusted normal values range from 72 to 104 cm/s]) (Fig 1A and B). No additional finding was reported. Magnetic resonance (MR) angiography of the kidney vessels was performed (Fig 2A) and antihypertensive therapy was initiated.

      PatientID: N/A

      KindredID: 1

      Case: F, 10Y0M, Ethnicity Unknown

      DiseaseAssertion: Assumed VHL

      FamilyInfo: No family history, authors indicate that the variant occurred de novo.

      CasePresentingHPOs: HP:0007514; HP:0000017; HP:0004421; HP:0012594; HP:0002666; HP:0001920 (Edema of the dorsum of hands; Nocturia; Elevated systolic blood pressure; Moderate albuminuria; Pheochromocytoma; Renal artery stenosis)

      CaseHPOFreeText: Patient presented with occasional high routine blood pressure at 10Y0M. She noted mild hand edema over the past days and reported recent nocturia. Physical examination appeared normal other than elevated blood pressure of 139/113 mm Hg. Urine tests showed moderate albuminuria (albumin-creatinine ratio of 50 mg/g), as well as high levels of noradrenaline and normetanephrine, suggestive of benign pheochromocytoma. Ultrasound showed normal kidney size and parenchyma, but color duplex sonography revealed increased flow rate of the left renal artery. This finding suggests renal artery stenosis. Magnetic Resonance Angiography of the kidney vessels showed a solid tumor that had cystic features. Tumor resection normalized blood pressure and pathologic examination of the removed tumor confirmed pheochromocytoma. Patient was diagnosed with secondary hypertension due to compression of renal vessels and catecholamine production by vHL-associated pheochromocytoma. Antihypertensive therapy with phenoxybenzamine as α blockade was initiated, along with subsequent expansion of the therapy with a β-blocker. Authors mention that the patient is in complete remission with no other manifestations of VHL disease and is receiving close follow-up.

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: p.G104V (c.311G>T)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: 223183, https://www.ncbi.nlm.nih.gov/clinvar/variation//223183/

      CAID: N/A

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: missense_variant; transversion

      CivicName: G104V (c.311G>T)

      MultipleGeneVariants: N/A

    1. PatientID: None

      KindredID: 1

      Case: F, 28Y0M, Ethnicity Unknown

      DiseaseAssertion: VHL

      FamilyInfo: No other family members presented any signs of VHL disease. DNA was available from her sister (32 years), brother (29 years) and mother (55 years). The patient’s father died from a myocardial infarction at the age of 58 years. Suggesting de novo but unclear with no test on father

      CasePresentingHPOs: HP:0010797, HP:0006880, HP:0001737, HP:0009711 (hemangioblastoma, cerebellar hemangioblastoma, pancreatic cysts, retinal capillary hemangioma)

      CaseHPOFreeText: at age 28, the patient presented with neurological symptoms from two hemangioblastomas (cerebellar and cerebro-spinal).

      CaseNotHPOs: HP:0002666 (pheochromocytoma)

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: L140Pfs*4 (c.418dup)

      CaseProblemVariantFreeText: N/A

      LegacyVariant: c.631_632insC

      ClinVar: N/A

      CAID: CA432421871 http://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/allele?hgvsOrDescriptor=NM_000551.3%3Ac.418dup

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: plus_1_frameshift_variant

      CivicName: L140fs (c.418dup)

      MultipleGeneVariants: N/A

    1. VHL-23c.341 − ?_642 + ?Del ex2 + 3[11]noA2+–+––Renal

      PatientID: VHL-23

      KindredID: 23

      Case: Sex Unknown, Age Unknown, Italian

      DiseaseAssertion: VHL

      FamilyInfo: No family history of VHL.

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

      CasePresentingHPOs: HP:0010797; HP:0000107; HP:0001732 (Hemangioblastoma, Renal cyst, Abnormality of the pancreas)

      CaseHPOFreeText: CNS hemangioblastoma and clinical classification: A2.

      CaseNotHPOs: HP:0002666; HP:0005584; HP:0009711 (Pheochromocytoma, Renal cell carcinoma, Retinal capillary hemangioma)

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: Exon 2-3 Deletion (c.341-?_642+?del)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: N/A

      CAID: N/A

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: exon_loss_variant

      CivicName: Null (c.341-?_642+?del)

      MultipleGeneVariants: N/A

    1. Table 3 Molecular Diagnosis of Patients with Glanzmann Thrombasthenia:

      Case4: GT-4, age, gender, ethnicity not specified

      DiseaseAssertion: Glanzmann thrombasthenia type I

      FamilyInfo: N/A

      ParentalGenotype: N/A

      CasePresentingHPOs: N/A

      CaseHPOFreeText: Patients presented with a variable bleeding diathesis; most patients had epistaxis (54%), cutaneous bleeding (58%), and menorrhagia (100% of women) while other common symptoms (oral cavity, GI, following dental extraction of mild injuries, postpartum, or hematomas) were in general milder. There is no specific phenotypes attached to probands in this paper.

      CaseNotHPOs: N/A

      CaseNotHPOsFreeText: N/A

      ProteinExpression: Flow cytometry showed that αIIbβ3 expression was less than 5%

      PlateletAggregation: There was severely impaired aggregation in response to all physiological agonists, and ristocetin induced platelet agglutination was normal or reduced to some extent.

      CasePreviousTesting: Total RNA from peripheral blood was used for cDNA synthesis for RT-PCR. Then, using specific oligonucleotides and conditions, they amplified and sequenced ITGA2B and ITGB3 by Sanger sequencing. Every mutation found in cDNA was confirmed in DNA samples.

      Gene: ITGB3

      Variant: NM_000212.2:c.569A>G (p.Tyr190Cys)

      LegacyVariant: N/A

      ClinVar: N/A

      CAiD: CA400023236

      gnomAD: N/A

    1. 510, 17MbPCCLPNEYes (17 years/lung)NoVHLc.499C>T (de novo)bp.(Arg167Gln)No

      PatientID: 5

      KindredID: 7

      Case: M, 17Y0M, Spanish

      DiseaseAssertion: VHL

      FamilyInfo: No family history, assumed de-novo, but unclear if parents were tested to confirm de-novo assertion.

      CohortInfo: 36 pediatric patients with pheochromocytomas and/or parangangliomas.

      CasePresentingHPOs: HP:0002666 (pheochromocytoma)

      CaseHPOFreeText: The patient had a benign bilateral pheochromocytoma that was secreting norepinephrine at age 10. At age 17, the pheochromocytoma reoccured but this time was malignant and metastasized to the lungs.

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: RET, SDHA, SDHB, SDHC, SDHD, SDHAF2, TMEM127, MAX

      PreviouslyPublished: Yes source unknown.

      SupplementalData: N/A

      Variant: p.R167W (c.499C>T) *The authors of this paper have seemingly called the wrong protein change for this variant.

      CaseProblemVariantFreeText: N/A

      LegacyVariant: N/A

      ClinVarID: 2218 https://www.ncbi.nlm.nih.gov/clinvar/variation/2218/

      CAID: N/A

      gnomAD: 0.000007954 https://gnomad.broadinstitute.org/variant/3-10191506-C-T

      VariantEvidence: N/A

      MutationType: missense_variant; transition

      CivicName: R167W (c.499C>T)

      MultipleGeneVariants: N/A

    1. 14 c.497T>C p.Val166Ala p.V166A Bilateral Pheo

      PatientID: None

      KindredID: 14

      Case: 15Y0M, F, Ethnicity Unknown

      DiseaseAssertion: pheochromocytoma

      FamilyInfo: The patient has no family history of VHL disease. Genetic testing reveals no mutation in patient's parents indicating that the mutation in patient is sporadic. This was further said to have occurred de novo.

      CasePresentingHPOs: HP:0002666 (pheochromocytoma)

      CaseHPOFreeText: bilateral pheochromocytoma diagnosed at age 11 years. She was said to have single-organ involvement and did not fulfill diagnostic criteria of VHL. 

      CaseNotHPOs: HP:0009711; HP:0005584; HP:0010797; HP:0000107; HP:0001737 (retinal capillary hemangioma, renal cell carcinoma, hemangioblastoma, renal cyst, pancreatic cysts)

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: Previously reported, HGMD (Human Gene Mutation Database: http://uwcmml1s.uwcm.ac.uk/uwcm/mg/search/120488.html)

      SupplementalData: N/A

      Variant: p.V166A (c.497T>C)

      CaseProblemVariantFreeText: N/A

      LegacyVariant: N/A

      ClinVarID: 43605 https://www.ncbi.nlm.nih.gov/clinvar/variation/43605/

      CAID: N/A

      gnomAD: N/A

      VariantEvidence: N/A

      MutationType: missense_variant;transition

      CivicName: V166A (c.497T>C)

      MultipleGeneVariants: N/A

    1. Case report A 6-year-old girl was brought into the ED by her parents in the late evening with a 5 week history of colicky, peri-umbilical pain and general malaise. Her mother reported that they had been to the family doctor repeatedly since the onset of symptoms and trialled a number of medications (including antispasmodics and various analgesics) without success. On further questioning, the patient described several episodes of spontaneous vomiting without obvious cause or association over the past month. Her appetite was poor and she had been losing weight. There were no other gastrointestinal or urinary symptoms. There was no history of fever, although she did report ‘sweating for no reason’ on occasion. She had also been suffering from intermittent, generalized headaches without any other focal symptoms over the same time period. She had been previously well, the only noteworthy point in her medical history being her conception through in vitro fertilization. There were no developmental concerns or family history of note. On examination, the patient appeared pale, tired, mildly dehydrated, but apyrexial and comfortable at rest. She was profoundly tachycardic, with a heart rate of 170 beats per minute, and had a BP of 203/157 mmHg on repeat measurements (normal systolic range 90–110 mmHg in this age group). Crucially, as the patient arrived in the early evening, she was triaged in the adult ED and not the paediatric ED (which was closed at this time), where BP would not have been part of routine observations in this age group. Urinary dipstick showed raised protein and blood. General examination was otherwise normal. In discussion with paediatric cardiology, the patient was started immediately on oral nifedipine to control the malignant hypertension prior to further investigation. Blood tests revealed low potassium of 3.0 mmol/L (normal 3.3–4.6) with raised urea (10.0 mmol/L; 2.5–6.5) and creatinine (81 mmol/L; 25–60). Routine haematology and biochemistry bloods (including liver and thyroid function tests) were otherwise unremarkable. An abdominal ultrasound scan demonstrated a 3 × 2.5 cm mass at the upper pole of the left kidney without a distinctly identifiable adrenal gland, a finding confirmed on CT (Fig. 1), which also showed some low attenuation suggestive of cystic change within the mass. Serial urinary metanephrines were subsequently found to be grossly elevated (17.0, 18.1 and 14.7 µmol/mmol creatinine; normal <1.74) with a predominant normetanephrine fraction, suggesting a diagnosis of phaeochromocytoma. Figure 1Open in figure viewerPowerPoint Ultrasound image (above) of the patient's left kidney (between the two crosses) clearly showing an abnormal mass associated with the organ. The adrenal cannot be distinctly identified. The mass was further characterized on CT (below, the mass having been circled). Sympathetic blockade was established first using gradually increasing doses of oral phenoxybenzamine (switched to i.v. dosing in the 5 days prior to surgery), then adding propranolol, aiming for a systolic BP of 80 mmHg with postural drop of 10 mmHg in order to facilitate safe removal of the tumour. Concurrent investigations identified raised serum renin and aldosterone levels consistent with secondary hyperaldosteronism. Serum calcitonin and urinary steroid profiles were normal, as was retinal screening for abnormalities associated with von Hippel-Lindau (vHL) disease, including retinal haemangiomas and hypertensive retinopathy. A laparoscopic left adrenalectomy took place 6 weeks after initial presentation, and priority was placed on close cardiovascular monitoring perioperatively. The patient was fit for discharge 3 days after surgery histology subsequently confirming the diagnosis of phaeochromocytoma.

      PatientID: 1

      KindredID: 1

      Case: F, 6Y0M, Ethnicity Unknown

      DiseaseAssertion: pheochromocytoma

      FamilyInfo: No history - the only noteworthy point in her medical history being her conception through in vitro fertilization, however no noted concerns. This mutation was not present in either parent, indicating a de novo.

      CasePresentingHPOs: HP:0002666 (pheochromocytoma)

      CaseHPOFreeText: patient presented with a prolonged history of general malaise, headaches and abdominal pain. She was noted to have malignant hypertension. Subsequent imaging of the abdomen demonstrated a left adrenal mass (diagnosis of phaeochromocytoma confirmed by serial raised urinary metanephrines). Sympathetic blockade was established prior to definitive surgical treatment, resulting in complete resolution of the patient’s symptoms and hypertension.

      CaseNotHPOs: N/A

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: p.N90H (c.268A>C)

      LegacyVariant: N/A

      CaseProblemVariantFreeText: N/A

      ClinVarID: N/A

      CAID: CA351750708 https://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/allele?hgvsOrDescriptor=NM_000551.3%3Ac.268A%3EC

      gnomAD: N/A

      VariantEvidence: Neurofibromatosis type (NF) 1 was excluded on clinical grounds as she had none of the cutaneous features. Mutational analysis of the RET proto-oncogene was normal, making MEN2 unlikely. Sequencing of exons 1–3 of the VHL gene revealed a novel single base pair substitution (A268C).

      MutationType: missense_variant;transversion

      CivicName: N90H (c.268A>C)

      MultipleGeneVariants: N/A

    1. Case 2

      Case2: female, 16 years old

      DiseaseAssertion: Myopathy

      FamilyInfo:

      CasePresentingHPOs: HP:0040083, HP:0002650, HP:0003722, HP:0001371, HP:0009027, HP:0012515

      "Toe walking, Scoliosis, Neck flexor weakness, Flexion contractures, Foot dorsiflexor weakness, Hip flexor weakness"

      CaseHPOFreeText: Presented with toe-walking at age 5 years and required bilateral tendo-Achilles releases at ages 7 and 13 years. A progressive scoliosis required surgical stabilization at age 12 years. At age 13 years neck movements were markedly restricted in all directions except extension, and there were mild flexion contractures at the hips, knees and ankles. There was marked neck flexion weakness, moderate weakness of hip extension and ankle dorsiflexion, and mild weakness of shoulder abduction, hip flexion and knee flexion/extension. While walking her upper body was angled forward, there was external rotation of the feet and mild foot-drop. The axial involvement in this case largely spares the lumbar musculature and is restricted to the upper thoracic and neck regions.

      CaseNotHPOs:

      CaseNotHPOFreeText:

      CasePreviousTesting: Serum creatine kinase was 308 iu/l (24–215). There was moderate restrictive lung disease (as determined by formal pulmonary function testing) at age 12 years (FVC 55% of predicted). Electromyography, sural nerve biopsy and cardiac investigations (EKG and echocardiogram) were normal. A quadriceps muscle biopsy taken at age 13 years demonstrated congenital fiber type disproportion. There was type 1 fiber predominance (82%), marked type 1 hypotrophy and type 2 fiber hypertrophy. Muscle MRI scan at age 12 years showed selective fatty infiltration of spinalis muscles in the upper thoracic and cervical regions. Unreported heterozygous variants in RYR1 (p.Asn4200Ser), COL6A3 (p.Ser2829Pro) and TTN (p.Gly4604Glu) were detected, but were all present in a healthy parent. In addition, Sanger sequencing was normal for ACTA1, SEPN1, LMNA, TPM3, TPM2, TNNT1 and MYOZ2.

      GenotypingMethod: A heterozygous MYH7 p.Leu1597Arg (c.4790T>G) missense change was found by whole exome sequencing studies, and confirmed by Sanger sequencing. This change was absent in parental DNA samples.

      Variant: NM_000257.4:c.4790T>G (MYH7)

      ClinVar: not found

      CAID: CA389037627

      gnomAD: not found

    2. Case 1

      Case1: female, 32 years old

      DiseaseAssertion: Myopathy

      FamilyInfo: Neither parent presents with MYH7 mutation

      CasePresentingHPOs: HP:0002828, HP:0040083, HP:0003722, HP:0012515, HP:0009027, HP:0001371

      "Multiple joint contractures, Toe walking, Neck flexor weakness, Hip flexor weakness, Foot dorsiflexor weakness, flexion contractures"

      CaseHPOFreeText: Generalized weakness that is most notable in the distal musculature, presented with toe walking age 2 years, required multiple Achilles tendon lengthening surgeries between ages 11–14 years. From age 19 years patient developed progressive weakness and contractures. At age 32 years, patient could walk only short distances and had prominent contractures of the finger flexors, neck flexors, and tendo-Achilles. There was marked weakness of neck flexion, shoulder abduction, hip flexion and ankle dorsiflexion and moderate weakness of wrist/hand flexors and mild weakness of knee flexion/extension. Facial and ocular muscle function was normal.

      CaseNotHPOs:

      CaseNotHPOFreeText:

      CasePreviousTesting: Muscle MRI of the thigh reveals involvement of many muscles including sartorius, quadriceps, and adductors, with relative sparing of biceps femoris. Muscle MRI of the distal lower extremity shows fatty infiltration in the soleus and lateral gastrocnemius with relative sparing of the medial gastrocnemius. Electromyography (EMG) showed myopathic features and serum CK was mildly elevated. Cardiac evaluation (via EKG and echocardiogram) was unremarkable. At age 32 years, based on formal pulmonary function testing, patient exhibited moderate restrictive lung disease (forced vital capacity 63% of predicted). A quadriceps muscle biopsy performed at age 11 years showed non-specific myopathic changes while a gastocnemius biopsy performed at age 32 years showed prominent mini-cores, increased internalized nuclei (~40% of fibers), type I fiber predominance, mildly increased endomysial fibrosis and focal fatty replacement. Sanger sequencing was normal for RYR1 (full exonic sequencing), SEPN1, LMNA, and COL6A1/2/3.

      GenotypingMethod: A heterozygous MYH7 p.Leu1597Arg (c.4790T>G) missense change was detected in the patient and not found in either parent.

      Variant: NM_000257.4:c.4790T>G (MYH7)

      ClinVar: not found

      CAID: CA389037627

      gnomAD: not found

    1. 37-year old woman

      Case1: Female patient, 37-year-old, At age 25(pregnant) an F8 mutation was identified, Family History of Severe HA

      DiseaseAssertion: Mild hemophilia A due to a family mutation and de novo mutation

      FamilyInfo: Family also has the large deletion of exon 1 to 22 of the F8 gene, Son (age 10) has mild Hemophilia A

      ParentalTesting: Father tested negative for any F8 mutations, Mother is an asymptomatic carrier of the familial large deletion

      CasePresentingHPOs: HP:0000978 (Bruising Susceptibility), HP:0000132 (Menorrhagia)

      CaseHPOFreeText: FVIII:C 7%, compounded heterozygous for the large gene deletion and c.1569G>T mild mutation

      CasePreviousTesting: Molecular analysis, Sequenced the whole coding region of the F8 gene

      Gene: F8

      Variant: 1. F8, EX1-22DEL 2. NM_000132.3:c.1569G>T (p.Leu523=)

      ClinVar: 1. 10122 https://www.ncbi.nlm.nih.gov/clinvar/variation/10122/

      1. 439678 https://www.ncbi.nlm.nih.gov/clinvar/variation/439678/

      gnomAD: 1. Not reported (F8, EX1-22DEL)

      1. MAF for Leu523= in Latino population 0.00007293 <br /> https://gnomad.broadinstitute.org/variant/X-154185415-C-A?dataset=gnomad_r2_1
    2. a woman diagnosed as a HA carrier

      Case2: Female patient, blood group O

      DiseaseAssertion: Severe Hemophilia A from de novo mutation

      FamilyInfo: Family history of severe Hemophilia A, Son diagnosed with severe HA, Sibling has intron 22 inversion on F8 gene

      ParentalTesting: NA

      CasePresentingHPOs: NA

      CaseHPOFreeRext: aPTT ratio 1.16 (within normal range ratio), FVIII:C 48% (low-normal)

      CasePreviousTesting: Molecular analysis that excluded intron 22 inversion (HA carrier), tested for intron 22 inversion (confirmed negative), tested for intron 1 inversion (found negative), sequenced the whole coding region of the F8 gene(c.1753-1G>A mutation found)

      Gene: F8

      Variant: NM_000132.3:c.1753-1G>A

      ClinVar: NA

      CAID: CA414911340

      gnomAD: Not reported

    1. PatientID: None

      KindredID: 6

      Case: Sex Unknown, Age Unknown, Ethnicity Unknown

      DiseaseAssertion: VHL

      FamilyInfo: No family history of VHL. Parents underwent genetic testing and were not found to harbor the P102Rfs*57 (c.305del) germline variant of the VHL gene, confirming a de novo mutation in the current patient.

      CasePresentingHPOs: HP:0010797; HP:0005584; HP:0002894 (Hemangioblastoma, Renal cell carcinoma, Neoplasm of the pancreas)

      CaseHPOFreeText: CNS hemangioblastoma, pancreatic cystadenoma and Renal carcinoma.

      CaseNotHPOs: HP:0009711; HP:0002894; HP:0002666 (Retinal capillary hemangioma, Neoplasm of the pancreas, Pheochromocytoma)

      CaseNotHPOFreeText: N/A

      CasePreviousTesting: N/A

      PreviouslyPublished: N/A

      SupplementalData: N/A

      Variant: p.P102Rfs*57 (c.305del)

      LegacyVariant: N/A

      CaseProblemVariantFreeText:

      ClinVarID: N/A

      CAID: CA658820710, https://reg.clinicalgenome.org/redmine/projects/registry/genboree_registry/allele?hgvsOrDescriptor=NM_000551.3%3Ac.305del

      gnomAD: N/A

      VariantEvidence: This variant was not found in 120 alleles from normal subjects in the Brazilian population.

      MutationType: deletion; minus_1_frameshift_variant

      CivicName: P102fs (c.305del)

      MultipleGeneVariants: N/A

  4. Jul 2026
    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

  5. Aug 2024
    1. Case: Patient Proband SS, Female, Caucasian

      DiseaseAssertion: UCD/OTCD

      FamilyInfo: De novo inheritance, no family history of disease

      CasePresentingHPOs: Hyperammonemia (HP:0001987), oroticaciduria (HP:0003218), Childhood onset (HP:0011463)

      CaseHPOFreeText:

      CaseNOTHPOs: Positive allopurinol test

      CaseNOTHPOFreeText:

      CasePreviousTesting: Genomic DNA isolated from peripheral blood leukocytes or cultured skin fibroblasts. Amplification by PCR used. SSCP analysis performed. Sequencing of both free and immobilized single strands carried out by dideoxy chain termination method.

      SupplementalData: Table 1: Mutations in the Ornithine Transcarbamylase Gene of 17 Females

      Variant: NM_000531.6:c.77+1G>A

      ClinVarID: 97313

      CAID: CA224773

      gnomAD: