Von Hippel-Lindau Disease Clinical Trial
Data Collection Protocol for Patients With Von Hippel Lindau Disease
To collect information from patients with vHL disease. Information collected will include data on the status of the disease, any surgeries or therapies patients have received for vHL disease, and quality of life.
Obtain prospective and retrospective data on lesion development, surgical history and systemic therapy use in patients with vHL disease
Assess genotype-phenotype correlation between VHL mutation type and patterns of lesion development
Assess genotype-phenotype correlation for response to belzutifan in an organ-specific manner
--Obtain quality of life data in patients with vHL disease
Presence of genetic confirmation or clinical criteria consistent with vHL disease.
Ability to understand and the willingness to sign a written informed consent document.
â€¢ Patients with psychiatric illness/social situations that would limit compliance with study requirements.
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