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.

Detailed 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