VHL patients share their struggles in new survey study
NCT ID NCT07275099
First seen Jan 07, 2026 · Last updated May 16, 2026 · Updated 23 times
Summary
This study asks 200 adults with von Hippel-Lindau syndrome (VHL) to fill out an online survey about their quality of life, emotional well-being, and difficulties getting care. No treatments or tests are given—just questions to learn what patients experience. The goal is to better understand the real-world challenges of living with VHL.
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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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Locations
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IRCCS Ospedale San Raffaele
Milan, MI, 20132, Italy
Conditions
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