Data Collection for Von Hippel Lindau Disease
This study is collecting information from people with Von Hippel Lindau (vHL) disease. The goal is to learn more about how vHL disease develops, what treatments (like surgeries or therapies) people receive, and how it affects their quality of life. Researchers will gather data on how lesions (growths) appear, past surgeries, and the use of a drug called belzutifan. They also want to see if there's a link between your specific vHL gene change and how the disease progresses or how you respond to belzutifan. You can join if you are 18 or older, have a confirmed diagnosis of vHL disease, and are willing to sign a consent form. The study will track how your disease progresses over an average of one year.
- Study design
- This is an observational study, meaning researchers will collect information without giving any specific treatments. It aims to enroll 125 participants.
- What's involved
- Not specified in the trial record.
- Compensation
- Not stated in the trial record.
- Follow-up
- Participants will be followed through study completion, which is an average of one year, to track progression-free survival (PFS).
AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.
Data Collection Protocol for Patients With Von Hippel Lindau Disease
At a glance
Conditions
NCT05955014
Where you'd take part
This study runs at 1 site. They're the same protocol — you choose where, and that choice sets who your contact draft is addressed to.
M D Anderson Cancer Center
Houston, Texasstudy coordinator listed
Recruiting
Sites open and close at different times, so the status above is per site — it can differ from the study's overall status.
Study leadership
- Eric Jonasch, MD · PRINCIPAL_INVESTIGATOR · [email protected]
Who to contact
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Inclusion
What this trial measures
- Progression-free survival (PFS)through study completion; an average of 1 year