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ClinicalTrials.gov public records Last synced Oct 1, 2026, 11:37 AM EDT

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Showing 1–24 of 40 matching trials from the live ClinicalTrials.gov search.
Filters: Condition: Von Hippel-lindau Syndrome Clear all
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 13, 2017 · Synced Oct 1, 2026, 11:37 AM EDT
Active, not recruiting Not applicable Interventional

Promoting Stress Management and Resilience Among Individuals With Von Hippel- Lindau Disease

NCT05737602
View directory record Official record
Conditions
Von Hippel-Lindau Disease, Genetic Disorder
Interventions
3RP-VHL
Behavioral
Lead sponsor
Massachusetts General Hospital
Other
Eligibility
18 Years and older
Enrollment
40 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2024 – 2028
U.S. locations
1
States / cities
Boston, Massachusetts
Source: ClinicalTrials.gov public record
Updated Jun 12, 2026 · Synced Oct 1, 2026, 11:37 AM EDT
Completed No phase listed Observational Results available

Natural History and Management of Pancreatic Lesions in Von Hippel-Lindau Disease

NCT00062166
View directory record Official record
Conditions
Von Hippel-Lindau Disease
Interventions
Not listed
Lead sponsor
National Cancer Institute (NCI)
NIH
Eligibility
12 Years to 80 Years
Enrollment
340 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2003 – 2017
U.S. locations
1
States / cities
Bethesda, Maryland
Source: ClinicalTrials.gov public record
Updated Nov 14, 2018 · Synced Oct 1, 2026, 11:37 AM 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 5, 2024 · Synced Oct 1, 2026, 11:37 AM EDT
Terminated Early Phase 1 Interventional

Bevacizumab (Avastin) in Unresectable/Recurrent Hemangioblastoma From Von-Hippel-Lindau Disease

NCT01015300
View directory record Official record
Conditions
Hemangioblastomas, Von Hippel Lindau Disease
Interventions
Avastin
Drug
Lead sponsor
Dartmouth-Hitchcock Medical Center
Other
Eligibility
18 Years and older
Enrollment
1 participant
Healthy volunteers
Healthy volunteers not accepted
Timeline
2009 – 2012
U.S. locations
1
States / cities
Lebanon, New Hampshire
Source: ClinicalTrials.gov public record
Updated May 11, 2012 · Synced Oct 1, 2026, 11:37 AM 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 30, 2018 · Synced Oct 1, 2026, 11:37 AM EDT
Completed Phase 2 Interventional Results available

Evaluation of 68Gallium-DOTATATE PET/CT for Detecting Neuroendocrine Tumors

NCT01967537
View directory record Official record
Conditions
Neuroendocrine Tumors, Von Hippel-Lindau Syndrome, Hippel-Lindau Disease
Interventions
68Gallium DOTATATE, Radio-guided surgery
Drug · Procedure
Lead sponsor
National Cancer Institute (NCI)
NIH
Eligibility
10 Years to 99 Years
Enrollment
341 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2013 – 2018
U.S. locations
1
States / cities
Bethesda, Maryland
Source: ClinicalTrials.gov public record
Updated Nov 19, 2019 · Synced Oct 1, 2026, 11:37 AM 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 25, 2026 · Synced Oct 1, 2026, 11:37 AM 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 31, 2026 · Synced Oct 1, 2026, 11:37 AM EDT
Completed Phase 2 Interventional Results available

Phase II Study of Axitinib (AG-013736) With Evaluation of the VEGF-pathway in Metastatic, Recurrent or Primary Unresectable Pheochromocytoma/Paraganglioma

NCT01967576
View directory record Official record
Conditions
Pheochromocytoma, Paraganglioma
Interventions
Axitinib (AG-013736)
Drug
Lead sponsor
National Cancer Institute (NCI)
NIH
Eligibility
18 Years to 100 Years
Enrollment
14 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2013 – 2020
U.S. locations
1
States / cities
Bethesda, Maryland
Source: ClinicalTrials.gov public record
Updated Jan 6, 2021 · Synced Oct 1, 2026, 11:37 AM 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 15, 2021 · Synced Oct 1, 2026, 11:37 AM 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 25, 2012 · Synced Oct 1, 2026, 11:37 AM 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 17, 2026 · Synced Oct 1, 2026, 11:37 AM 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 27, 2012 · Synced Oct 1, 2026, 11:37 AM EDT
Completed Phase 2 Interventional

Metabolic Mapping to Measure Retinal Metabolism

NCT00385333
View directory record Official record
Conditions
Macular Degeneration, Diabetic Retinopathy, Hippel-Landau Disease, Mitochondria
Interventions
Feasibility Study - Imaging System
Procedure
Lead sponsor
National Eye Institute (NEI)
NIH
Eligibility
18 Years and older
Enrollment
28 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2006 – 2010
U.S. locations
1
States / cities
Bethesda, Maryland
Source: ClinicalTrials.gov public record
Updated Jul 2, 2017 · Synced Oct 1, 2026, 11:37 AM 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 2, 2017 · Synced Oct 1, 2026, 11:37 AM 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 3, 2026 · Synced Oct 1, 2026, 11:37 AM 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 6, 2017 · Synced Oct 1, 2026, 11:37 AM EDT
Terminated No phase listed Observational

Von Hippel-Lindau Disease Genetic Epidemiology Study

NCT00001803
View directory record Official record
Conditions
Von Hippel Lindau Disease, Kidney Neoplasms
Interventions
Not listed
Lead sponsor
National Cancer Institute (NCI)
NIH
Eligibility
13 Years to 100 Years
Enrollment
546 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
1999 – 2020
U.S. locations
1
States / cities
Bethesda, Maryland
Source: ClinicalTrials.gov public record
Updated Jan 13, 2020 · Synced Oct 1, 2026, 11:37 AM EDT
Completed No phase listed Observational

Retrospective Case Series of Trans-scleral Cryotherapy for Retinal Hemangioblastoma

NCT04458935
View directory record Official record
Conditions
Retinal Hemangioblastoma, Von Hippel-Lindau Disease
Interventions
Not listed
Lead sponsor
National Eye Institute (NEI)
NIH
Eligibility
7 Years to 120 Years
Enrollment
25 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2020 – 2026
U.S. locations
1
States / cities
Bethesda, Maryland
Source: ClinicalTrials.gov public record
Updated Jun 10, 2026 · Synced Oct 1, 2026, 11:37 AM 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 24, 2024 · Synced Oct 1, 2026, 11:37 AM EDT
Completed Phase 1 Interventional

EYE001 to Treat Retinal Tumors in Patients With Von Hippel-Lindau Syndrome

NCT00056199
View directory record Official record
Conditions
Hippel-Lindau Disease
Interventions
EYE001
Drug
Lead sponsor
National Eye Institute (NEI)
NIH
Eligibility
Not listed
Enrollment
5 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2003 – 2005
U.S. locations
1
States / cities
Bethesda, Maryland
Source: ClinicalTrials.gov public record
Updated Mar 4, 2008 · Synced Oct 1, 2026, 11:37 AM EDT
Completed Phase 1 Interventional

Effect of Vorinostat on Nervous System Hemangioblastomas in Von Hippel-Lindau Disease (Missense Mutation Only)

NCT02108002
View directory record Official record
Conditions
Von Hippel-Lindau Disease
Interventions
Vorinostat
Drug
Lead sponsor
National Institute of Neurological Disorders and Stroke (NINDS)
NIH
Eligibility
18 Years and older
Enrollment
7 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2014 – 2018
U.S. locations
1
States / cities
Bethesda, Maryland
Source: ClinicalTrials.gov public record
Updated Sep 14, 2018 · Synced Oct 1, 2026, 11:37 AM 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 13, 2026 · Synced Oct 1, 2026, 11:37 AM EDT