Clinical trials: VHL Syndrome
Von Hippel Lindau Disease
Data Collection Protocol for Patients With Von Hippel Lindau Disease
To collect information from patients with vHL disease. Information collected will include data on the status of the disease, any surgeries or therapies patients have received for vHL disease, and quality of life.
- Trial name
- NCT05955014
- Where
- United States
- Volunteers
- 125 people
- Sponsor
- M.D. Anderson Cancer Center
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)
Von Hippel-Lindau Syndrome
Ranibizumab Injections to Treat Retinal Tumors in Patients With Von Hippel-Lindau Syndrome
This study will examine whether he drug ranibizumab can slow or stop the growth of angiomas (blood vessel tumors) in patients with Von Hippel-Lindau syndrome (VHL).
- Trial name
- NCT00089765
- Testing
- Ranibizumab
- Where
- United States
- Volunteers
- 5 people
- Sponsor
- National Eye Institute (NEI)
Clear Cell Renal Cell Cancer (ccRCC), Urothelial Carcinoma (UC)
18F-T2 PET/CT Imaging for CAIX Positive Solid Tumors
The goal of this clinical trial is to evaluate the diagnostic value of CAIX protein specific probe 18F-T2 in PET/CT imaging in participants with solid tumors.
- Conditions
- Clear Cell Renal Cell Cancer (ccRCC), Urothelial Carcinoma (UC), Colorectal Cancer, Cervical Cancer
- Trial name
- NCT07557225
- Testing
- 18F-T2 PET/CT
- Where
- China
- Volunteers
- 200 people, healthy volunteers welcome
- Sponsor
- Peking University First Hospital
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, Hemangioblastoma
Visualizing Vascular Endothelial Growth Factor (VEGF) Producing Lesions in Von Hippel-Lindau Disease
Von Hippel Lindau disease (VHLD) is an inherited syndrome characterized by vascular malformations, kidney cancer, adrenal gland and pancreas tumors.
- Conditions
- Von Hippel-Lindau Disease, Hemangioblastoma, Renal Cell Carcinoma, Pheochromocytoma
- Trial name
- VHLimage (NCT00970970)
- Testing
- 89Zr bevacizumab PET scan
- Where
- Netherlands
- Volunteers
- 22 people
- Sponsor
- University Medical Center Groningen
Von Hippel Lindau Disease
MSD Belzutifan PAS
This is a prospective observational cohort study evaluating the effectiveness and safety of belzutifan treatment in routine clinical practice.
- Trial name
- NCT06554730
- Testing
- Belzutifan
- Sponsor
- Merck Sharp & Dohme LLC
Clear Cell Renal Cell Carcinoma, VHL Syndrome
Overtaking Intra and Inter Tumoral Heterogeneity In Von Hippel-Lindau Related Renal Cancer
The goal of this study is to comprehensively map intra and inter tumor heterogeneity of ccRCC in VHL patients through the use of imaging, molecular biology and genomics techniques.
- Trial name
- ITHORinVHL (NCT06195150)
- Testing
- Blood collection
- Where
- Italy
- Volunteers
- 3 people
- Sponsor
- IRCCS San Raffaele
Retinal Hemangioblastoma, Von Hippel-Lindau Disease
Retrospective Case Series of Trans-scleral Cryotherapy for Retinal Hemangioblastoma
Background: Retinal hemangioblastoma (RH) is a tumor. It grows from the retina in the eye. It can threaten a person s vision. Trans-scleral cryotherapy is used to destroy the tumors and minimize the long-term risks of vision…
- Trial name
- NCT04458935
- Where
- United States
- Volunteers
- 25 people
- Sponsor
- National Eye Institute (NEI)
Adenocarcinoma, Prostate Neoplasms
Use of Tracking Devices to Locate Abnormalities During Invasive Procedures
This study will evaluate the accuracy and effectiveness of an experimental tracking device for locating abnormalities during invasive procedures, such as biopsy or ablation, that cannot easily be visualized by usual imaging…
- Conditions
- Adenocarcinoma, Prostate Neoplasms, Prostate Cancer, Renal Cell Carcinoma
- Trial name
- NCT00102544
- Testing
- EM Tracking
- Where
- United States
- Volunteers
- 3,894 people
- Sponsor
- National Institutes of Health Clinical Center (CC)
Pheochromocytoma/Paraganglioma, Pancreatic Neuroendocrine Tumor
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)
This is a study to evaluate the efficacy and safety of belzutifan monotherapy in participants with advanced pheochromocytoma/paraganglioma (PPGL), pancreatic neuroendocrine tumor (pNET), von Hippel-Lindau (VHL) disease-associated…
- Conditions
- Pheochromocytoma/Paraganglioma, Pancreatic Neuroendocrine Tumor, Von Hippel-Lindau Disease, Advanced Gastrointestinal Stromal Tumor
- Trial name
- NCT04924075
- Testing
- Belzutifan
- Where
- 84 sites in United States, Australia and 20 more
- Volunteers
- 355 people
- Sponsor
- Merck Sharp & Dohme LLC
Von Hippel-Lindau Disease
Screening for Endolymphatic Sac Tumours (ELSTs) in Von Hippel-Lindau (vHL) Patients
The purpose of the study is to investigate how best to screen for Endolymphatic sac tumors (ELSTs) in von Hippel-Lindau (vHL) patients in order to diagnose the ELSTs while they are still small so that hearing loss can be…
- Trial name
- NCT02420067
- Where
- Denmark
- Volunteers
- 380 people
- Sponsor
- Marie Luise Bisgaard, MD
Neuroendocrine Tumors, Von Hippel-Lindau Syndrome
Evaluation of 68Gallium-DOTATATE PET/CT for Detecting Neuroendocrine Tumors
Background: Neuroendocrine tumors (NETs) are rare but have been more common over the past decade. The only treatment for NETs is surgery, but most are found when they are too advanced for surgery.
- Conditions
- Neuroendocrine Tumors, Von Hippel-Lindau Syndrome, Hippel-Lindau Disease
- Trial name
- NCT01967537
- Testing
- 68Gallium DOTATATE, Radio-guided surgery
- Where
- United States
- Volunteers
- 341 people
- Sponsor
- National Cancer Institute (NCI)
Von Hippel-Lindau Syndrome, Renal Cell Carcinoma
Evaluation of Sunitinib Malate in Patients With Von Hippel-Lindau Syndrome (VHL) Who Have VHL Lesions to Follow
The goal of this clinical research study is to learn if sunitinib malate (SU011248) can help to control VHL. The safety of this drug will also be studied.
- Conditions
- Von Hippel-Lindau Syndrome, Renal Cell Carcinoma, Hemangioblastoma
- Trial name
- NCT00330564
- Testing
- SU011248
- Where
- United States
- Volunteers
- 15 people
- Sponsor
- M.D. Anderson Cancer Center
Acute Leukemia, Adenomatous Polyposis
Familial Investigations of Childhood Cancer Predisposition
NOTE: This is a research study and is not meant to be a substitute for clinical genetic testing. Families may never receive results from the study or may receive results many years from the time they enroll.
- Conditions
- Acute Leukemia, Adenomatous Polyposis, Adrenocortical Carcinoma, AML
- Trial name
- SJFAMILY (NCT03050268)
- Where
- United States
- Volunteers
- 1,500 people
- Sponsor
- St. Jude Children's Research Hospital
Von Hippel-Lindau Disease, CNS Hemangioblastoma
Treatment of Von Hippel-Lindau (VHL)-Related Hemangioblastoma With PTK787/ZK 222584
The purpose of this study is to determine whether PTK787/ZK 222584 is effective in treating hemangioblastoma of the brain and/or retina in patients with von Hippel-Lindau disease.
- Conditions
- Von Hippel-Lindau Disease, CNS Hemangioblastoma, Retinal Hemangioblastoma
- Trial name
- NCT00052013
- Testing
- PTK787/ZK 222584
- Where
- 2 sites in United States
- Volunteers
- 11 people
- Sponsor
- Novartis Pharmaceuticals
Von Hippel Lindau, Von Hippel Lindau Disease
Real-World Effectiveness and Pharmacogenetics of Belzutifan in VHL Syndrome: The BELIEVE-VHL Trial
The BELIEVE-VHL Trial is a prospective real-life study designed to evaluate the therapeutic effects, benefits, and adverse effects of belzutifan, as well as the timing of treatment response and disease progression in patients…
- Conditions
- Von Hippel Lindau, Von Hippel Lindau Disease, Von Hippel Lindau-Deficient Clear Cell Renal Cell Carcinoma, Hemangioblastoma (HB) of the Central Nervous System (CNS)
- Trial name
- BELIEVE-VHL (NCT07167329)
- Testing
- Belzutifan
- Where
- Brazil
- Volunteers
- 100 people
- Sponsor
- José Claudio Casali da Rocha
VHL - Von Hippel-Lindau Syndrome
Quality of Life, Psychological Impact, and Care-related Challenges in Patients Affected by Von Hippel-Lindau Syndrome.
This is a single-centre, cross-sectional observational study aiming to assess the psychological burden, quality of life, and perceived barriers to care in patients with von Hippel-Lindau syndrome (VHL).
- Trial name
- QoL- VHL (NCT07275099)
- Where
- Italy
- Volunteers
- 200 people
- Sponsor
- IRCCS Ospedale San Raffaele
Von Hippel-Lindau Syndrome
Sunitinib Malate to Treat Advanced Eye Disease in Patients With Von Hippel-Lindau Syndrome
This open-label study will pilot the use of systemic sunitinib malate, a dual inhibitor of vascular endothelial growth factor (VEGF) and platelet derived growth factor (PDGF), in five participants with Von Hippel-Lindau (VHL) to…
- Trial name
- VHL3 (NCT00673816)
- Testing
- Sunitinib Malate
- Where
- United States
- Volunteers
- 2 people
- Sponsor
- National Eye Institute (NEI)
Von Hippel-Lindau Syndrome
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
Background: People with Von-Hippel-Lindau (VHL) disease may experience significant vision loss as a result of retinal capillary hemangiomas (RCH), the most common and often earliest manifestation of VHL.
- Trial name
- NCT02859441
- Testing
- Ranibizumab, E10030
- Where
- United States
- Volunteers
- 3 people
- Sponsor
- National Eye Institute (NEI)