VHL patients share their struggles in new Quality-of-Life survey
NCT ID NCT07275099
First seen Jan 07, 2026 · Last updated May 21, 2026 · Updated 25 times
Summary
This study asks 200 adults with von Hippel-Lindau syndrome (VHL) to fill out an online survey about their emotional well-being, quality of life, and difficulties getting care. No treatments or tests are given—the goal is simply to learn from patients' experiences. The information gathered may help doctors and researchers better support people living with this rare genetic condition.
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This is a summary of
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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Genom att skicka in godkänner du våra Användarvillkor
Contacts and locations
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Genom att skicka in godkänner du våra Användarvillkor
Locations
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IRCCS Ospedale San Raffaele
Milan, MI, 20132, Italy
Conditions
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