Clinical trials: VHL Syndrome
Von Hippel-Lindau Disease
68Ga-NY104 PET/CT in Von Hippel-Lindau Disease
This is a prospective, single-center, single-arm, diagnostic phase 2 study in patients with von Hippel-Lindau disease. VHL disease is a rare syndrome characterized by VHL gene mutation and HIF activation.
- Trial name
- NCT05810246
- Testing
- 68Ga-NY104 PET/CT Contrast-enhanced MRI of the brain and contrast-enhanced CT of abdomen and pelvis) 68Ga-NODAGA-LM3 PET/CT (exploratory)
- Where
- China
- Volunteers
- 19 people
- Sponsor
- Peking Union Medical College Hospital
Deafness, Kidney Diseases
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
The von Hippel Lindau (VHL) gene has recently been identified as the genetic defect resulting in a syndrome of multiple neoplasias.
- Conditions
- Deafness, Kidney Diseases, Kidney Neoplasms, Neoplasms
- Trial name
- NCT00001668
- Where
- United States
- Volunteers
- 75 people
- Sponsor
- National Institute of Neurological Disorders and Stroke (NINDS)
Von Hippel Lindau Disease, Kidney Neoplasms
Von Hippel-Lindau Disease Genetic Epidemiology Study
The Von Hippel-Lindau (VHL) Disease Genetic Epidemiology Study is a family-based case-control study to be conducted by the National Cancer Institute.
- Trial name
- NCT00001803
- Where
- United States
- Volunteers
- 546 people
- Sponsor
- National Cancer Institute (NCI)
Von Hippel-Lindau Disease
Natural History and Management of Pancreatic Lesions in Von Hippel-Lindau Disease
Von Hippel-Lindau disease (VHL) is an inherited cancer syndrome. Patients are at risk for developing pancreatic cysts and tumors. These tumors are more aggressive in some people than in others.
- Trial name
- NCT00062166
- Where
- United States
- Volunteers
- 340 people
- Sponsor
- National Cancer Institute (NCI)
Von Hippel-Lindau Disease
Effect of Vorinostat on Nervous System Hemangioblastomas in Von Hippel-Lindau Disease (Missense Mutation Only)
Background: Von Hippel-Lindau (VHL) disease is a rare gene disease. People with VHL often have a brain tumor called hemangioblastoma. Standard treatment for these tumors is risky surgery.
- Trial name
- NCT02108002
- Testing
- Vorinostat
- Where
- United States
- Volunteers
- 7 people
- Sponsor
- National Institute of Neurological Disorders and Stroke (NINDS)
Coats' Disease, Idiopathic Retinal Telangiectasia
Treatment of Exudative and Vasogenic Chorioretinal Diseases Including Variants of AMD and Other CNV Related Maculopathy
The purpose of this study is to evaluate the safety and tolerability of intravitreal injections of ranibizumab in the treatment of AMD variants and other choroidal neovascularization (CNV) related conditions (Coats' disease…
- Conditions
- Coats' Disease, Idiopathic Retinal Telangiectasia, Retinal Angiomatous Proliferation, Polypoidal Choroidal Vasculopathy
- Trial name
- FVF4140S (NCT00470977)
- Testing
- ranibizumab injection (0.5 mg)
- Where
- 2 sites in United States
- Volunteers
- 18 people
- Sponsor
- Manhattan Eye, Ear & Throat Hospital
VHL Gene Mutation, VHL
MK-3795 (PT2385) for the Treatment of Von Hippel-Lindau Disease-Associated Clear Cell Renal Cell Carcinoma (MK-3795-003)
The primary objective of this study is to assess the overall response rate (ORR) of von Hippel-Lindau (VHL) disease-associated clear cell renal cell carcinoma (ccRCC) tumors in VHL participants treated with MK-3795.
- Conditions
- VHL Gene Mutation, VHL, VHL Syndrome, VHL Gene Inactivation
- Trial name
- NCT03108066
- Testing
- MK-3795
- Where
- United States
- Volunteers
- 4 people
- Sponsor
- Peloton Therapeutics, Inc., a subsidiary of Merck & Co., Inc. (Rahway, New Jersey USA)
Von Hippel-Lindau Disease, Genetic Disorder
Promoting Stress Management and Resilience Among Individuals With Von Hippel- Lindau Disease
The Relaxation Response Resiliency Program (3RP) has shown efficacy in improving coping and resilience across diverse populations; however, little is known about how it helps individuals manage the challenges of living with a…
- Trial name
- NCT05737602
- Testing
- 3RP-VHL
- Where
- United States
- Volunteers
- 40 people
- Sponsor
- Massachusetts General Hospital
Kidney Cancer, Von Hippel-lindau Syndrome
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
RATIONALE: The identification of gene mutations in individuals who have or are at risk for von Hippel-Lindau syndrome may allow doctors to better determine the genetic processes involved in the development of cancer.
- Trial name
- NCT00075348
- Testing
- mutation analysis
- Where
- United States
- Volunteers
- 260 people
- Sponsor
- National Institutes of Health Clinical Center (CC)
Hippel-Lindau Disease, Kidney Cancer
17AAG to Treat Kidney Tumors in Von Hippel-Lindau Disease
This study will examine whether the drug 17AAG (17-allylamino 17-demethoxygeldanamycin) can shrink kidney tumors in patients with Von Hippel-Lindau disease (VHL), a rare, inherited syndrome in which patients develop tumors in…
- Trial name
- NCT00088374
- Testing
- 17 allylamino-17-demethoxygeldanamycin, 18 FDG (Fludeoxyglucose 18F), [15-O] H2O
- Where
- United States
- Volunteers
- 9 people
- Sponsor
- National Cancer Institute (NCI)
Carcinoma, Renal Cell
DFF332 as a Single Agent and in Combination With Everolimus & Immuno-Oncology Agents in Advanced/Relapsed Renal Cancer & Other Malignancies
This was a first in human study of DFF332, a small molecule that targets a protein called HIF2α. By acting on HIF2α, DFF332 may be able to stop the growth of certain types of cancer.
- Trial name
- NCT04895748
- Testing
- DFF332, RAD001, PDR001
- Where
- 11 sites in United States, Czechia and 5 more
- Volunteers
- 40 people
- Sponsor
- Novartis Pharmaceuticals
Rare Diseases, Amyloidosis
Institutional Registry of Rare Diseases
The goal of this observational study is to create a single macro registry system with data collection on common clinical features, grouping the different rare diseases (RD).
- Conditions
- Rare Diseases, Amyloidosis, Sarcoidosis, Phacomatosis
- Trial name
- NCT06573723
- Where
- Argentina
- Volunteers
- 380 people
- Sponsor
- Hospital Italiano de Buenos Aires
VHL Pancreatic Neuroendocrine Tumors, Von Hippel-Lindau Disease
Natural History and Management of Von Hippel-Lindau (VHL) Associated Pancreatic Neuroendocrine Tumors
Background: People with von Hippel-Lindau (VHL) can have problems with a variety of organs, such as the pancreas. The disease can cause tumors of the pancreas. This can result in life-threatening complications.
- Conditions
- VHL Pancreatic Neuroendocrine Tumors, Von Hippel-Lindau Disease, Neuroendocrine Tumors
- Trial name
- NCT04074135
- Testing
- 68-Gallium DOTATATE
- Where
- United States
- Volunteers
- 740 people
- Sponsor
- National Cancer Institute (NCI)
Von Hippel-Lindau Disease
Study of Sunitinib in Patients With Von Hippel-Lindau (VHL) Disease
VHL patients may benefit from sunitinib. This study will investigate the following objectives : PRIMARY OBJECTIVE To determine the objective response rate according to RECIST criteria, in VHL patients with advanced tumors or…
- Trial name
- VHLSUT (NCT01168440)
- Testing
- Sunitinib
- Where
- 3 sites in France
- Volunteers
- 5 people
- Sponsor
- Association Pour La Recherche des Thérapeutiques Innovantes en Cancérologie
Hemangioblastomas, Von Hippel Lindau Disease
Bevacizumab (Avastin) in Unresectable/Recurrent Hemangioblastoma From Von-Hippel-Lindau Disease
Von Hippel-Lindau (VHL) disease is an inherited syndrome manifested by a variety of benign and malignant tumors. Hemangioblastomas are the most common lesion associated with VHL disease affecting 60-84% of patients with a mean…
- Trial name
- NCT01015300
- Testing
- Avastin
- Where
- United States
- Volunteers
- 1 people
- Sponsor
- Dartmouth-Hitchcock Medical Center
Von Hippel-Lindau Disease, Hereditary Leiomyomatosis and Renal Cell Cancer
MyVHL: Patient Natural History Study
MyVHL is a multi-patient database which helps researchers identify patterns across VHL patients. MyVHL provides you -and researchers -with more complete information about VHL, like how your lifestyle, medications, and other…
- Conditions
- Von Hippel-Lindau Disease, Hereditary Leiomyomatosis and Renal Cell Cancer, Birt-Hogg-Dube Syndrome, SDHB Gene Mutation
- Trial name
- MyVHL (NCT03749980)
- Where
- United States
- Volunteers
- 10,000 people, healthy volunteers welcome
- Sponsor
- Joshua Mann, MPH