Von Hippel-Lindau Disease Clinical Trial
Data Collection Protocol for Patients With Von Hippel Lindau Disease
Summary
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.
Full Description
Primary Objectives:
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
Secondary Objectives:
--Obtain quality of life data in patients with vHL disease
Eligibility Criteria
Inclusion Criteria:
Presence of genetic confirmation or clinical criteria consistent with vHL disease.
Ability to understand and the willingness to sign a written informed consent document.
Exclusion Criteria:
• Patients with psychiatric illness/social situations that would limit compliance with study requirements.
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There is 1 Location for this study
Houston Texas, 77030, United States More Info
Principal Investigator
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