Von Hippel-Lindau disease

This phase 2 study tests belzutifan, a daily pill that blocks a protein called HIF-2α, in people with advanced rare cancers like pheochromocytoma/paraganglioma, pancreatic neuroendocrine tumors, VHL disease-associated tumors, and certain other solid tumors. The goal is to see if …

This extension study follows people with von Hippel-Lindau (VHL) disease or advanced solid tumors who are already taking belzutifan in another trial. The goal is to see how long they live and how safe the drug is over the long term. About 450 participants will take belzutifan by …

This study tests the drug belzutifan in 100 people with von Hippel-Lindau (VHL) syndrome, a genetic condition that causes tumors in various organs. Researchers will track how well the drug shrinks tumors and how long it takes for the disease to progress, while also monitoring sid…

This study is testing a new imaging agent called 18F-T2, which is designed to highlight tumors that produce a protein called CAIX. About 200 adults with various cancers (like kidney, lung, or breast cancer) will receive an injection of 18F-T2 and then undergo a PET/CT scan. The g…

This study tests a special PET scan that uses a radioactive tracer to find tumors in people with Von Hippel-Lindau (VHL) disease, a genetic condition that causes tumors to grow. About 38 adults with VHL will receive one dose of the tracer and then have a PET/CT scan. The goal is …

This study is creating a large collection of health information and biological samples (like blood, saliva, and eye tissue) from people with and without retinal diseases. Researchers aim to use this database to better understand conditions like age-related macular degeneration an…

This study gathers information from 125 people with von Hippel-Lindau (vHL) disease, a rare genetic condition that causes tumors. Researchers will track disease status, past surgeries and treatments, and quality of life. The goal is to better understand how vHL progresses over ti…

This study aims to discover new genes that may cause certain cancers to run in families. Researchers will collect blood samples and health information from 1,500 people in families where multiple members have had cancer, especially childhood cancers. The goal is to build a regist…

This study follows families with a history of inherited kidney cancer to learn more about the disease's genetic causes and how it progresses. Researchers will collect blood, tissue, and urine samples from affected individuals and their relatives. The goal is to identify new genes…

This study follows people with von Hippel-Lindau (VHL) disease who have pancreatic tumors or cysts. The goal is to learn how these growths change over time and to see if a special type of scan (68-Gallium DOTATATE PET/CT) can find them better. Participants will have regular check…

This study is creating a large database to collect information on people with rare diseases like amyloidosis, sarcoidosis, and Gaucher disease. Researchers will track patients' health over time, including their symptoms, treatments, and outcomes. The goal is to improve diagnosis …

This study explores whether a special PET/CT scan using a tracer called [18F]PT2385 can detect a protein (HIF2α) that helps kidney cancers grow. About 35 adults with kidney cancer or a genetic condition called VHL syndrome will receive the scan, and results will be compared with …