New study tracks Real-World data for rare disease vHL
NCT ID NCT05955014
First seen Jun 27, 2026 · Last updated Jun 27, 2026
Summary
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 time.
This is an AI summary of the original study and may miss details. Read our disclaimer.
Get updates
Get notified about this study
Sign up to get updates when this study changes or when new studies for VON HIPPEL-LINDAU DISEASE are added.
By submitting, you agree to our Terms of use
Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
Locations
-
M D Anderson Cancer Center
RECRUITINGHouston, Texas, 77030, United States
More trials for these conditions
Other studies related to the condition(s) this trial covers.
- Scientists track hidden brain tumors in children with rare genetic condition
- Can a Stress-Busting program help VHL patients cope better?
- New PET scan agent aims to sharply detect multiple cancers
- Belzutifan extension trial aims to extend lives in VHL and advanced cancer
- Frozen tumors, clearer vision? scientists dig into 20 years of eye records
- New registry aims to unlock secrets of rare diseases