Data Collection Protocol for Patients With Von Hippel Lindau Disease

M.D. Anderson Cancer Center125 enrolled

Overview

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.

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

Study Type

OBSERVATIONAL

Enrollment

125

Conditions

Von Hippel Lindau Disease

Eligibility

Sex: ALLMin age: 18 Years

Medical Language ↔ Plain English

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.

Locations (1)

M D Anderson Cancer Center

Houston, Texas, United States

RECRUITING

Outcomes

Primary Outcomes

Progression-free survival (PFS)

Time frame: through study completion; an average of 1 year

Central Contacts

Eric Jonasch, MD

CONTACT

(713) 563-7232 ejonasch@mdanderson.org

Data from ClinicalTrials.gov

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