New study aims to better understand von hippel lindau disease through data collection

NCT ID NCT05955014

First seen Nov 20, 2025 · Last updated May 12, 2026 · Updated 22 times

Summary

This study collects information from 125 people with von Hippel Lindau (vHL) disease to track how the disease changes over time, what treatments they receive, and how it affects their quality of life. Participants must have a genetic or clinical diagnosis of vHL. The goal is to better understand the disease and improve future care.

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This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.

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Contacts and locations

Study contacts

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

Locations

  • M D Anderson Cancer Center

    RECRUITING

    Houston, Texas, 77030, United States

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact

Conditions

Explore the condition pages connected to this study.