New study aims to better understand rare disease through data collection
NCT ID NCT05955014
First seen Nov 20, 2025 · Last updated Jun 17, 2026 · Updated 26 times
Summary
This study gathers information from 125 people with von Hippel-Lindau (vHL) disease to learn more about how the condition progresses and how it affects daily life. Participants provide data on their disease status, treatments, surgeries, and quality of life. No experimental treatments are given; the goal is simply to collect real-world information to help future research.
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the original study
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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.
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
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Study contacts
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
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M D Anderson Cancer Center
RECRUITINGHouston, Texas, 77030, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
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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.