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Showing 1–24 of 33 matching trials from the live ClinicalTrials.gov search.
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Filters: Condition: VHL - Von Hippel-Lindau Syndrome Clear all
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 Jul 23, 2026, 4:21 PM 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 11, 2026 · Synced Jul 23, 2026, 4:21 PM EDT
Terminated Phase 2 Interventional Results available

Evaluation of Sunitinib Malate in Patients With Von Hippel-Lindau Syndrome (VHL) Who Have VHL Lesions to Follow

NCT00330564
View directory record Official record
Conditions
Von Hippel-Lindau Syndrome, Renal Cell Carcinoma, Hemangioblastoma
Interventions
SU011248
Drug
Lead sponsor
M.D. Anderson Cancer Center
Other
Eligibility
18 Years and older
Enrollment
15 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2006 – 2011
U.S. locations
1
States / cities
Houston, Texas
Source: ClinicalTrials.gov public record
Updated Jun 26, 2024 · Synced Jul 23, 2026, 4:21 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 Jul 23, 2026, 4:21 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 Jul 23, 2026, 4:21 PM EDT
Completed Phase 1Phase 2 Interventional Results available

A Phase I/II Trial for Intravitreous Treatment of Severe Ocular Von Hippel-Lindau Disease Using a Combination of the PDGF Antagonist E10030 and the VEGF Antagonist Ranibizumab

NCT02859441
View directory record Official record
Conditions
Von Hippel-Lindau Syndrome
Interventions
Ranibizumab, E10030
Drug
Lead sponsor
National Eye Institute (NEI)
NIH
Eligibility
18 Years and older
Enrollment
3 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2017 – 2019
U.S. locations
1
States / cities
Bethesda, Maryland
Source: ClinicalTrials.gov public record
Updated Oct 31, 2021 · Synced Jul 23, 2026, 4:21 PM EDT
Enrolling by invitation Not applicable Interventional

Use of Tracking Devices to Locate Abnormalities During Invasive Procedures

NCT00102544
View directory record Official record
Conditions
Adenocarcinoma, Prostate Neoplasms, Prostate Cancer, Renal Cell Carcinoma, Von Hippel Lindau Disease
Interventions
EM Tracking
Device
Lead sponsor
National Institutes of Health Clinical Center (CC)
NIH
Eligibility
18 Years to 120 Years
Enrollment
3,894 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2005 – 2028
U.S. locations
1
States / cities
Bethesda, Maryland
Source: ClinicalTrials.gov public record
Updated Jul 6, 2026 · Synced Jul 23, 2026, 4:21 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 Jul 23, 2026, 4:21 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 Jul 23, 2026, 4:21 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 Jul 23, 2026, 4:21 PM 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 10, 2012 · Synced Jul 23, 2026, 4:21 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 Jul 23, 2026, 4:21 PM 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 9, 2026 · Synced Jul 23, 2026, 4:21 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 Jul 23, 2026, 4:21 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 Jul 23, 2026, 4:21 PM 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 13, 2018 · Synced Jul 23, 2026, 4:21 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 Jul 16, 2026 · Synced Jul 23, 2026, 4:21 PM 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 12, 2020 · Synced Jul 23, 2026, 4:21 PM EDT
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 Jul 23, 2026, 4:21 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 Jul 23, 2026, 4:21 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 Jul 23, 2026, 4:21 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 Jul 23, 2026, 4:21 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 Jul 23, 2026, 4:21 PM 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 1, 2017 · Synced Jul 23, 2026, 4:21 PM EDT