Observational Study to Collect Data on Von Hippel Lindau Disease Including Lesion Development, Treatment History, and Quality of Life

What this Trial Is About

This observational study focuses on patients with Von Hippel Lindau vHL disease. It aims to collect detailed information about the disease status, including lesion development, surgical history, and systemic therapy use. Researchers seek to understand how different VHL gene mutations relate to patterns of lesion development and responses to the drug belzutifan in specific organs. The study also gathers quality of life data from affected individuals. Participants will not receive any study treatments, as this is a data collection protocol. Information will be gathered both retrospectively and prospectively regarding surgeries, therapies, and lesion progression. The study will observe patients over an average period of one year to assess progression-free survival. Quality of life assessments will also be part of the data collected. During the study, participants will provide medical history and undergo evaluations to document disease progression and treatment responses. Data collected will include clinical status, treatment history, and patient-reported quality of life. The study is sponsored by M.D. Anderson Cancer Center and will continue until December 2026. Participants involvement includes sharing information that helps researchers understand vHL disease better and monitor changes over time.

Data Collection Protocol for Patients With Von Hippel Lindau Disease