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Showing 1–24 of 40 matching trials from the live ClinicalTrials.gov search.
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Filters: Condition: Von Hippel-Lindau Syndrome Clear all
Completed No phase listed Observational

Genetic Study to Identify Gene Mutations in Participants Previously Enrolled in Clinical Trial NCI-99-C-0053 Who Have Von Hippel-Lindau Syndrome or Are at Risk for Von Hippel-Lindau Syndrome

NCT00075348
View directory record Official record
Conditions
Kidney Cancer, Von Hippel-lindau Syndrome
Interventions
mutation analysis
Genetic
Lead sponsor
National Institutes of Health Clinical Center (CC)
NIH
Eligibility
18 Years and older
Enrollment
260 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2003 – 2008
U.S. locations
1
States / cities
Bethesda, Maryland
Source: ClinicalTrials.gov public record
Updated Mar 14, 2012 · Synced Sep 28, 2026, 1:03 PM EDT
Recruiting Phase 2 Interventional

Belzutifan/MK-6482 for the Treatment of Advanced Pheochromocytoma/Paraganglioma (PPGL), Pancreatic Neuroendocrine Tumor (pNET), Von Hippel-Lindau (VHL) Disease-Associated Tumors, Advanced Gastrointestinal Stromal Tumor (wt GIST), or Solid Tumors With HIF-2α Related Genetic Alterations (MK-6482-015)

NCT04924075
View directory record Official record
Conditions
Pheochromocytoma/Paraganglioma, Pancreatic Neuroendocrine Tumor, Von Hippel-Lindau Disease, Advanced Gastrointestinal Stromal Tumor, HIF-2α Mutated Cancers
Interventions
Belzutifan
Drug
Lead sponsor
Merck Sharp & Dohme LLC
Industry
Eligibility
12 Years and older
Enrollment
355 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2021 – 2032
U.S. locations
14
States / cities
Los Angeles, California • Chicago, Illinois • Warrenville, Illinois + 10 more
Source: ClinicalTrials.gov public record
Updated Sep 24, 2026 · Synced Sep 28, 2026, 1:03 PM EDT
Completed Phase 2 Interventional Results available

MK-3795 (PT2385) for the Treatment of Von Hippel-Lindau Disease-Associated Clear Cell Renal Cell Carcinoma (MK-3795-003)

NCT03108066
View directory record Official record
Conditions
VHL Gene Mutation, VHL, VHL Syndrome, VHL Gene Inactivation, Von Hippel, Von Hippel-Lindau Disease, Von Hippel's Disease, Von Hippel-Lindau Syndrome, Modifiers of, Clear Cell Renal Cell Carcinoma, Clear Cell RCC, ccRCC
Interventions
MK-3795
Drug
Lead sponsor
Peloton Therapeutics, Inc., a subsidiary of Merck & Co., Inc. (Rahway, New Jersey USA)
Industry
Eligibility
18 Years and older
Enrollment
4 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2017 – 2023
U.S. locations
1
States / cities
Bethesda, Maryland
Source: ClinicalTrials.gov public record
Updated Sep 23, 2024 · Synced Sep 28, 2026, 1:03 PM EDT
Completed Phase 2 Interventional Results available

17AAG to Treat Kidney Tumors in Von Hippel-Lindau Disease

NCT00088374
View directory record Official record
Conditions
Hippel-Lindau Disease, Kidney Cancer
Interventions
17 allylamino-17-demethoxygeldanamycin, 18 FDG (Fludeoxyglucose 18F), [15-O] H2O, EPL diluent
Drug
Lead sponsor
National Cancer Institute (NCI)
NIH
Eligibility
18 Years and older
Enrollment
9 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2004 – 2009
U.S. locations
1
States / cities
Bethesda, Maryland
Source: ClinicalTrials.gov public record
Updated Jul 26, 2012 · Synced Sep 28, 2026, 1:03 PM EDT
Completed Phase 3 Interventional Results available

A Study of Cabozantinib (XL184) vs Everolimus in Subjects With Metastatic Renal Cell Carcinoma

NCT01865747
View directory record Official record
Conditions
Renal Cell Carcinoma
Interventions
Cabozantinib tablets, Everolimus (Afinitor) tablets
Drug
Lead sponsor
Exelixis
Industry
Eligibility
18 Years and older
Enrollment
658 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2013 – 2021
U.S. locations
59
States / cities
Birmingham, Alabama • Anchorage, Alaska • Gilbert, Arizona + 46 more
Source: ClinicalTrials.gov public record
Updated Apr 26, 2021 · Synced Sep 28, 2026, 1:03 PM EDT
Completed Phase 2 Interventional Results available

Contrast-enhanced Ultrasound as a Screening Tool for Kidney Cancer in Patients With Von-Hippel Lindau

NCT03907657
View directory record Official record
Conditions
Von-Hippel Lindau, Kidney Disease, Chronic
Interventions
Perflutren lipid microsphere, Sulfur hexafluoride lipid microspheres
Drug
Lead sponsor
UNC Lineberger Comprehensive Cancer Center
Other
Eligibility
16 Years to 99 Years
Enrollment
15 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2019 – 2023
U.S. locations
1
States / cities
Chapel Hill, North Carolina
Source: ClinicalTrials.gov public record
Updated May 20, 2024 · Synced Sep 28, 2026, 1:03 PM EDT
Recruiting No phase listed Observational

Data Collection Protocol for Patients With Von Hippel Lindau Disease

NCT05955014
View directory record Official record
Conditions
Von Hippel Lindau Disease
Interventions
Not listed
Lead sponsor
M.D. Anderson Cancer Center
Other
Eligibility
18 Years and older
Enrollment
125 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2023 – 2026
U.S. locations
1
States / cities
Houston, Texas
Source: ClinicalTrials.gov public record
Updated Jun 25, 2026 · Synced Sep 28, 2026, 1:03 PM EDT
Active, not recruiting Phase 2 Interventional

A Phase 2 Study of Belzutifan (PT2977, MK-6482) for the Treatment of Von Hippel Lindau (VHL) Disease-Associated Renal Cell Carcinoma (RCC) (MK-6482-004)

NCT03401788
View directory record Official record
Conditions
VHL - Von Hippel-Lindau Syndrome, VHL Gene Mutation, VHL Syndrome, VHL Gene Inactivation, VHL-Associated Renal Cell Carcinoma, VHL-Associated Clear Cell Renal Cell Carcinoma
Interventions
Belzutifan
Drug
Lead sponsor
Peloton Therapeutics, Inc., a subsidiary of Merck & Co., Inc. (Rahway, New Jersey USA)
Industry
Eligibility
18 Years and older
Enrollment
50 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2018 – 2027
U.S. locations
8
States / cities
Bethesda, Maryland • Boston, Massachusetts • Ann Arbor, Michigan + 5 more
Source: ClinicalTrials.gov public record
Updated Apr 12, 2026 · Synced Sep 28, 2026, 1:03 PM EDT
Recruiting No phase listed Observational Accepts healthy volunteers

National Eye Institute Biorepository for Retinal Diseases

NCT01496625
View directory record Official record
Conditions
Age-Related Macular Degeneration, Diabetic Retinopathy, Von Hippel-Lindau Syndrome, Retinal Disease, Retinal Vein Occlusion
Interventions
Not listed
Lead sponsor
National Eye Institute (NEI)
NIH
Eligibility
2 Years to 120 Years
Enrollment
650 participants
Healthy volunteers
Accepts healthy volunteers
Timeline
Started 2012
U.S. locations
1
States / cities
Bethesda, Maryland
Source: ClinicalTrials.gov public record
Updated Sep 27, 2026 · Synced Sep 28, 2026, 1:03 PM EDT
Recruiting Phase 2 Interventional

Natural History and Management of Von Hippel-Lindau (VHL) Associated Pancreatic Neuroendocrine Tumors

NCT04074135
View directory record Official record
Conditions
VHL Pancreatic Neuroendocrine Tumors, Von Hippel-Lindau Disease, Neuroendocrine Tumors
Interventions
68-Gallium DOTATATE
Drug
Lead sponsor
National Cancer Institute (NCI)
NIH
Eligibility
12 Years and older
Enrollment
740 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2020 – 2036
U.S. locations
1
States / cities
Bethesda, Maryland
Source: ClinicalTrials.gov public record
Updated Apr 19, 2026 · Synced Sep 28, 2026, 1:03 PM EDT
Completed Phase 1 Interventional

Ranibizumab Injections to Treat Retinal Tumors in Patients With Von Hippel-Lindau Syndrome

NCT00089765
View directory record Official record
Conditions
Von Hippel-Lindau Syndrome
Interventions
Ranibizumab
Drug
Lead sponsor
National Eye Institute (NEI)
NIH
Eligibility
18 Years and older
Enrollment
5 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2004 – 2007
U.S. locations
1
States / cities
Bethesda, Maryland
Source: ClinicalTrials.gov public record
Updated Jul 1, 2017 · Synced Sep 28, 2026, 1:03 PM EDT
Completed Phase 2 Interventional Results available

Phase II Study of Vandetanib in Individuals With Kidney Cancer

NCT00566995
View directory record Official record
Conditions
Renal Cancer, Von Hippel Lindau
Interventions
ZACTIMA (Vandetanib) (ZD6474)
Drug
Lead sponsor
National Cancer Institute (NCI)
NIH
Eligibility
18 Years to 100 Years
Enrollment
37 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2008 – 2015
U.S. locations
1
States / cities
Bethesda, Maryland
Source: ClinicalTrials.gov public record
Updated Oct 29, 2018 · Synced Sep 28, 2026, 1:03 PM EDT
Terminated Phase 2 Interventional

89Zr-girentuximab for PET Imaging of CAIX Positive Solid Tumors

NCT05563272
View directory record Official record
Conditions
Cervical Cancer, Colorectal Cancer, Esophageal Cancer, Gastric Cancer, Glioblastoma Multiforme, Cholangiocarcinoma, Hepatocellular Carcinoma, Head and Neck Squamous Cell Carcinoma, Nasopharyngeal Carcinoma, Non Small Cell Lung Cancer, Small Cell Lung Cancer, Epithelial Ovarian Cancer, Pancreatic Ductal Adenocarcinoma, Soft Tissue Sarcoma, Gastric Adenocarcinoma, Malignant Mesothelioma (MM), Von Hippel Lindau, Bladder Cancer, Bladder Urothelial Carcinoma
Interventions
89Zr-girentuximab for PET/CT imaging of CAIX positive tumors
Diagnostic Test
Lead sponsor
Telix Pharmaceuticals (Innovations) Pty Ltd
Industry
Eligibility
18 Years to 95 Years
Enrollment
11 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2023 – 2025
U.S. locations
10
States / cities
Los Angeles, California • Miami, Florida • Boston, Massachusetts + 7 more
Source: ClinicalTrials.gov public record
Updated Jul 9, 2025 · Synced Sep 28, 2026, 1:03 PM EDT
Terminated Early Phase 1 Interventional

68Ga-DOTA-TOC PET/CT in Imaging Participants With Neuroendocrine Tumors

NCT03001349
View directory record Official record
Conditions
Meningioma, Metastatic Well Differentiated Neuroendocrine Neoplasm, Multiple Endocrine Neoplasia Type 1, Neuroendocrine Neoplasm, Somatostatin Positive Neoplastic Cells Present, Von Hippel-Lindau Syndrome
Interventions
Computed Tomography, Gallium Ga 68-Edotreotide, Positron Emission Tomography
Procedure · Drug
Lead sponsor
M.D. Anderson Cancer Center
Other
Eligibility
Not listed
Enrollment
4 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2017 – 2021
U.S. locations
1
States / cities
Houston, Texas
Source: ClinicalTrials.gov public record
Updated Feb 14, 2021 · Synced Sep 28, 2026, 1:03 PM EDT
Terminated Phase 1 Interventional

DFF332 as a Single Agent and in Combination With Everolimus & Immuno-Oncology Agents in Advanced/Relapsed Renal Cancer & Other Malignancies

NCT04895748
View directory record Official record
Conditions
Carcinoma, Renal Cell
Interventions
DFF332, RAD001, PDR001, NIR178
Drug
Lead sponsor
Novartis Pharmaceuticals
Industry
Eligibility
18 Years to 100 Years
Enrollment
40 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2021 – 2026
U.S. locations
5
States / cities
Duarte, California • Boston, Massachusetts • St Louis, Missouri + 2 more
Source: ClinicalTrials.gov public record
Updated Mar 2, 2026 · Synced Sep 28, 2026, 1:03 PM EDT
Recruiting No phase listed Observational

Familial Investigations of Childhood Cancer Predisposition

NCT03050268
View directory record Official record
Conditions
Acute Leukemia, Adenomatous Polyposis, Adrenocortical Carcinoma, AML, BAP1 Tumor Predisposition Syndrome, Carney Complex, Choroid Plexus Carcinoma, Constitutional Mismatch Repair Deficiency Syndrome, Diamond-Blackfan Anemia, DICER1 Syndrome, Dyskeratosis Congenita, Emberger Syndrome, Familial Acute Myeloid Leukemia, Familial Adenomatous Polyposis, Fanconi Anemia, Familial Cancer, Familial Wilms Tumor, Familial Neuroblastoma, GIST, Hereditary Breast and Ovarian Cancer, Hereditary Paraganglioma-Pheochromocytoma Syndrome, Hodgkin Lymphoma, Juvenile Polyposis, Li-Fraumeni Syndrome, Lynch Syndrome, MDS, Melanoma Syndrome, Multiple Endocrine Neoplasia Type 1, Multiple Endocrine Neoplasia Type 2, Neuroblastoma, Neurofibromatosis Type 1, Neurofibromatosis Type II, Nevoid Basal Cell Carcinoma Syndrome, Non Hodgkin Lymphoma, Noonan Syndrome and Other Rasopathy, Overgrowth Syndromes, Pancreatic Cancer, Peutz-Jeghers Syndrome, Pheochromocytoma/Paraganglioma, PTEN Hamartoma Tumor Syndrome, Retinoblastoma, Rhabdoid Tumor Predisposition Syndrome, Rhabdomyosarcoma, Rothmund-Thomson Syndrome, Tuberous Sclerosis, Von Hippel-Lindau Disease
Interventions
Not listed
Lead sponsor
St. Jude Children's Research Hospital
Other
Eligibility
Not listed
Enrollment
1,500 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2017 – 2037
U.S. locations
1
States / cities
Memphis, Tennessee
Source: ClinicalTrials.gov public record
Updated Jun 16, 2026 · Synced Sep 28, 2026, 1:03 PM EDT
Completed Phase 2 Interventional

Treatment of Von Hippel-Lindau (VHL)-Related Hemangioblastoma With PTK787/ZK 222584

NCT00052013
View directory record Official record
Conditions
Von Hippel-Lindau Disease, CNS Hemangioblastoma, Retinal Hemangioblastoma
Interventions
PTK787/ZK 222584
Drug
Lead sponsor
Novartis Pharmaceuticals
Industry
Eligibility
18 Years and older
Enrollment
11 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
Started 2003
U.S. locations
2
States / cities
Boston, Massachusetts • Durham, North Carolina
Source: ClinicalTrials.gov public record
Updated Mar 5, 2017 · Synced Sep 28, 2026, 1:03 PM EDT
Recruiting No phase listed Observational Accepts healthy volunteers

MyVHL: Patient Natural History Study

NCT03749980
View directory record Official record
Conditions
Von Hippel-Lindau Disease, Hereditary Leiomyomatosis and Renal Cell Cancer, Birt-Hogg-Dube Syndrome, SDHB Gene Mutation
Interventions
Not listed
Lead sponsor
Joshua Mann, MPH
Other
Eligibility
Not listed
Enrollment
10,000 participants
Healthy volunteers
Accepts healthy volunteers
Timeline
2012 – 2028
U.S. locations
1
States / cities
Boston, Massachusetts
Source: ClinicalTrials.gov public record
Updated Apr 25, 2024 · Synced Sep 28, 2026, 1:03 PM EDT
Terminated Phase 2 Interventional Results available

TKI 258 in Von Hippel-Lindau Syndrome (VHL)

NCT01266070
View directory record Official record
Conditions
Von Hippel-Lindau Syndrome
Interventions
Dovitinib
Drug
Lead sponsor
M.D. Anderson Cancer Center
Other
Eligibility
18 Years and older
Enrollment
6 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2012 – 2015
U.S. locations
1
States / cities
Houston, Texas
Source: ClinicalTrials.gov public record
Updated Feb 12, 2017 · Synced Sep 28, 2026, 1:03 PM EDT
Completed Phase 2 Interventional Results available

Pazopanib Hydrochloride in Treating Patients With Von Hippel-Lindau Syndrome

NCT01436227
View directory record Official record
Conditions
Von Hippel-Lindau Syndrome
Interventions
Laboratory Biomarker Analysis, Pazopanib Hydrochloride
Other · Drug
Lead sponsor
M.D. Anderson Cancer Center
Other
Eligibility
Not listed
Enrollment
32 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2012 – 2024
U.S. locations
1
States / cities
Houston, Texas
Source: ClinicalTrials.gov public record
Updated May 1, 2025 · Synced Sep 28, 2026, 1:03 PM EDT
Terminated Phase 1Phase 2 Interventional Results available

Sunitinib Malate to Treat Advanced Eye Disease in Patients With Von Hippel-Lindau Syndrome

NCT00673816
View directory record Official record
Conditions
Von Hippel-Lindau Syndrome
Interventions
Sunitinib Malate
Drug
Lead sponsor
National Eye Institute (NEI)
NIH
Eligibility
18 Years and older
Enrollment
2 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2008 – 2011
U.S. locations
1
States / cities
Bethesda, Maryland
Source: ClinicalTrials.gov public record
Updated Jan 4, 2024 · Synced Sep 28, 2026, 1:03 PM EDT
Completed No phase listed Observational

Endolymphatic Sac Tumors in a Population of Patients With Von Hippel-Lindau Disease:The Natural History and Pathobiology, and a Prospective Non-Randomized Clinical Trial of Hearing Preservation Surgery in Patients With Early Stage Endolymphatic Sac Tumors

NCT00001668
View directory record Official record
Conditions
Deafness, Kidney Diseases, Kidney Neoplasms, Neoplasms, Retinal Diseases
Interventions
Not listed
Lead sponsor
National Institute of Neurological Disorders and Stroke (NINDS)
NIH
Eligibility
Not listed
Enrollment
75 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
1997 – 2000
U.S. locations
1
States / cities
Bethesda, Maryland
Source: ClinicalTrials.gov public record
Updated Mar 3, 2008 · Synced Sep 28, 2026, 1:03 PM EDT
Active, not recruiting No phase listed Observational

Study of Brain and Spinal Cord Tumor Growth and Cyst Development in Patients With Von Hippel Lindau Disease

NCT00005902
View directory record Official record
Conditions
Hemangioblastoma, Hippel Lindau Disease
Interventions
Not listed
Lead sponsor
National Institute of Neurological Disorders and Stroke (NINDS)
NIH
Eligibility
8 Years to 75 Years
Enrollment
250 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
Started 2001
U.S. locations
1
States / cities
Bethesda, Maryland
Source: ClinicalTrials.gov public record
Updated Aug 30, 2026 · Synced Sep 28, 2026, 1:03 PM EDT
Completed Phase 1Phase 2 Interventional

Treatment of Exudative and Vasogenic Chorioretinal Diseases Including Variants of AMD and Other CNV Related Maculopathy

NCT00470977
View directory record Official record
Conditions
Coats' Disease, Idiopathic Retinal Telangiectasia, Retinal Angiomatous Proliferation, Polypoidal Choroidal Vasculopathy, Pseudoxanthoma Elasticum, Pathological Myopia, Multi-focal Choroiditis, Rubeosis Iridis, Von Hippel Lindau Disease, BEST VITELLIFORM MACULAR DYSTROPHY, MULTIFOCAL (Disorder)
Interventions
ranibizumab injection (0.5 mg)
Drug
Lead sponsor
Manhattan Eye, Ear & Throat Hospital
Other
Eligibility
18 Years and older
Enrollment
18 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2007 – 2010
U.S. locations
2
States / cities
New York, New York
Source: ClinicalTrials.gov public record
Updated Oct 24, 2012 · Synced Sep 28, 2026, 1:03 PM EDT