Clinical trials: VHL Syndrome
Hemangioblastoma of CNS, Von Hippel-Lindau Disease
Propranolol and Von Hippel-Lindau Disease
Propranolol (beta-blocker), is successfully used for the treatment of infantile hemangiomas, the most common vascular tumor of newborns. The mechanism is related to its anti-angiogenetic and pro-apoptotic effects.
- Trial name
- PRO-HEB (NCT05424016)
- Testing
- Propranolol, follow-up
- Where
- France
- Volunteers
- 85 people
- Sponsor
- Assistance Publique - Hôpitaux de Paris
Von Hippel-Lindau Disease
Drivers of Hypoxia-induced Angiogenesis in Tumor Development
The study aims to elucidate hypoxia-induced angiogenesis in tumor development using central nervous system (CNS) hemangioblastoma tumorgenesis as a model.
- Trial name
- NCT03979833
- Testing
- Whole exome sequencing
- Where
- 2 sites in Denmark
- Volunteers
- 10 people
- Sponsor
- University of Copenhagen
Age-Related Macular Degeneration, Diabetic Retinopathy
National Eye Institute Biorepository for Retinal Diseases
Background: To understand diseases of the retina and the eye, information is needed about people with and without such diseases. Researchers want to study these people and follow them over time.
- Conditions
- Age-Related Macular Degeneration, Diabetic Retinopathy, Von Hippel-Lindau Syndrome, Retinal Disease
- Trial name
- NCT01496625
- Where
- United States
- Volunteers
- 650 people, healthy volunteers welcome
- Sponsor
- National Eye Institute (NEI)
VHL - Von Hippel-Lindau Syndrome
Belzutifan VHL RCC HK Prospective Registry
This study aims to evaluate the Belzutifan's efficacy, drug safety, disease course, and the health-economic impact of the treatment to Von Hippel-Lindau (VHL) syndrome.
- Trial name
- NCT07554508
- Where
- Hong Kong
- Volunteers
- 100 people
- Sponsor
- Chinese University of Hong Kong
Neoplastic Syndromes, Hereditary, Urologic Neoplasms
Genetic Analysis of Inherited Urologic Malignant Disorders: Collection of Samples
Investigation of the causes of genetic defects relating to hereditary urologic malignancies will be undertaken. These rare disorders result from inherited or newly arising mutations in genes involved in the development and…
- Trial name
- NCT00001814
- Where
- United States
- Volunteers
- 600 people, healthy volunteers welcome
- Sponsor
- National Cancer Institute (NCI)
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
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)
Renal Tumor Histology, Kidney Cancer
Frequency, Clinical Phenotype and Genetic Analysis of Heritable Kidney Cancer Syndromes
This study will investigate the frequency, clinical phenotype, management and molecular genetic defects of heritable kidney cancer syndromes. Families with kidney cancer with known or suspected genetic basis will be enrolled.
- Conditions
- Renal Tumor Histology, Kidney Cancer, Renal Cell Carcinoma, Familial Renal Cancer
- Trial name
- NCT05534854
- Testing
- Gene test
- Where
- China
- Volunteers
- 500 people, healthy volunteers welcome
- Sponsor
- RenJi Hospital
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
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)
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
Neuroendocrine Neoplasm, Neuroendocrine Neoplasm of Gastrointestinal Tract
Genetic Bases of Neuroendocrine Neoplasms in Mexican Patients
Neuroendocrine neoplasms (NENs) are a heterogeneous group of lesions derived from cells with the ability to produce hormones that may arise from multiple different organs.
- Conditions
- Neuroendocrine Neoplasm, Neuroendocrine Neoplasm of Gastrointestinal Tract, Neuroendocrine Neoplasm of Lung, Thymic Neuroendocrine Neoplasm
- Trial name
- NCT06523582
- Where
- 3 sites in Mexico
- Volunteers
- 750 people, healthy volunteers welcome
- Sponsor
- Universidad Nacional Autonoma de Mexico
Von Hippel-Lindau Disease, Central Nervous System Hemangioblastoma
Pediatric Von Hippel-Lindau Disease: Natural History, Predictive Factors, and Long-Term Functional Outcomes of Central Nervous System Hemangioblastomas
Von Hippel-Lindau (VHL) disease is a rare hereditary cancer predisposition syndrome associated with the development of central nervous system hemangioblastomas from childhood.
- Trial name
- VHL-PED-CHB (NCT07705529)
- Where
- 3 sites in France
- Volunteers
- 25 people
- Sponsor
- Assistance Publique - Hôpitaux de Paris
Hemangioblastoma, Hippel Lindau Disease
Study of Brain and Spinal Cord Tumor Growth and Cyst Development in Patients With Von Hippel Lindau Disease
The purpose of this study is to learn more about the growth of brain and spinal cord tumors and cysts that develop in association with them in patients with von Hippel-Lindau disease.
- Trial name
- NCT00005902
- Where
- United States
- Volunteers
- 250 people
- Sponsor
- National Institute of Neurological Disorders and Stroke (NINDS)
Von Hippel Lindau-Deficient Clear Cell Renal Cell Carcinoma
A Study of HS-10516 in Patients With VHL Syndrome Associated Tumors
The aim of the Phase Ia portion is to identify the maximum tolerated dose or maximum acceptable dose MTD/MAD of HS-10516. The phase Ib portion will evaluate the preliminary efficacy of HS-10516 in patients with VHL Syndrome…
- Trial name
- NCT06553339
- Testing
- Oral HS-10516
- Where
- China
- Volunteers
- 60 people
- Sponsor
- Jiangsu Hansoh Pharmaceutical Co., Ltd.
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 Syndrome
Pazopanib Hydrochloride in Treating Patients With Von Hippel-Lindau Syndrome
This phase II trial studies the side effects and how well pazopanib hydrochloride works in treating patients with von Hippel-Lindau syndrome.
- Trial name
- NCT01436227
- Testing
- Laboratory Biomarker Analysis, Pazopanib Hydrochloride
- Where
- United States
- Volunteers
- 32 people
- Sponsor
- M.D. Anderson Cancer Center
VHL - Von Hippel-Lindau Syndrome
CAT-VHL Exploring the Role of Carbonic Anhydrase IX as Diagnostic and Theranostic Target in Von-Hippel Lindau Disease
The study is a phase 2, non-comparative and non-randomized, single arm, national clinical trial testing the hypothesis that CAIX-PET has diagnostic and theranostic potential in VHL disease and in VHL-/- tumors.
- Trial name
- CAT-VHL (NCT07171905)
- Testing
- investigating the role of CAIX as target in VHL disease and in VHL-/- tumors.
- Where
- Italy
- Volunteers
- 38 people
- Sponsor
- IRCCS Ospedale San Raffaele
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)
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