Study collects data from people with von Hippel-Lindau disease

This study follows people who have von Hippel-Lindau (VHL) over time to better understand how the condition changes. It may help doctors plan future treatments by collecting long-term health information.

This study looks at how early changes in kidney cells can lead to tumors in people with VHL disease. It may help understand why some people develop kidney cancer and how to prevent it.

This study looks back at the health records of children with Von Hippel-Lindau disease to understand how the condition progresses and to find factors that predict long-term outcomes. It focuses on hemangioblastomas in the brain and spinal cord, which are non-cancerous tumors.

This trial focuses on checking whether a specific inner-ear tumor (called an endolymphatic sac tumor) can be found earlier in people with Von Hippel-Lindau (vHL) disease. It may help doctors detect problems sooner so you can discuss treatment options earlier, if needed.

This trial tests the drug belzutifan (a pill taken by mouth) in people with VHL syndrome who have kidney or other VHL-related tumors that are growing or can be measured. The study looks at how well belzutifan works in real-world conditions and whether certain genetic factors affect how the drug works.

This trial tests a special imaging agent that targets a protein found in tumors related to Von Hippel-Lindau (VHL) disease. It may help doctors better detect and monitor these tumors.