Researchers seek to uncover hidden struggles of rare disease patients
NCT ID NCT07275099
Summary
This study aims to understand the psychological impact and quality of life for people living with von Hippel-Lindau (VHL) syndrome, a rare genetic condition. Researchers will survey approximately 200 adults with genetically confirmed VHL about their daily challenges and experiences accessing healthcare. The study involves completing a single anonymous online questionnaire and does not test any treatments.
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Genom att skicka in godkänner du våra Användarvillkor
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Genom att skicka in godkänner du våra Användarvillkor
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Conditions
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