Researchers ask: how does rare genetic disorder affect mental health and healthcare access?
NCT ID NCT07275099
Summary
This study aims to understand the psychological impact and quality of life for adults living with von Hippel-Lindau (VHL) syndrome, a rare genetic disorder. Researchers will survey approximately 200 participants using a one-time online questionnaire to learn about their daily challenges and experiences accessing healthcare. The goal is to gather information that could help improve support and care for people with this condition.
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Conditions
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