Data Collection Protocol for Patients With Von Hippel Lindau Disease

M.D. Anderson Cancer Center

Status: Enrolling

Conditions: Von Hippel Lindau Disease

Study type: Observational

Funder types: Other

Identifiers

NCT05955014

NCI-2023-05216 (Other Identifier)

2022-0665

Details and patient eligibility

About

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

Enrollment: 125 estimated patients

Sex: All

Ages: 18+ years old

Volunteers: No Healthy Volunteers

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.