VHL patients share their struggles in new quality-of-life survey
NCT ID NCT07275099
First seen Jun 27, 2026 · Last updated Jun 27, 2026
Summary
This study asks 200 adults with von Hippel-Lindau syndrome to fill out an anonymous online questionnaire about their quality of life, psychological well-being, and difficulties accessing care. No treatment or medical tests are involved — the goal is simply to learn what patients experience so that future care can be improved.
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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.
Contacts and locations
Locations
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IRCCS Ospedale San Raffaele
Milan, MI, 20132, Italy
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