Data Collection Protocol for Patients With Von Hippel Lindau Disease

Recruiting

• Conditions: Von Hippel Lindau Disease

• Registration Number: NCT05955014
• Lead Sponsor: M.D. Anderson Cancer Center

Brief 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

Study Timeline

• Study First Submitted: 2023-07-10
• Study First Submitted QC: 2023-07-18
• Study First Posted: 2023-07-20
• Study Start: 2023-08-24
• Status Verified: 2025-05
• Last Update Submitted: 2025-05-05
• Last Update Posted: 2025-05-07
• Primary Completion: 2026-12-31
• Study Completion: 2026-12-31

Recruitment & Eligibility

• Status: RECRUITING
• Sex: All
• Target Recruitment: 125

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.

Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
Progression-free survival (PFS)	through study completion; an average of 1 year

Trial Locations

Locations (1)

M D Anderson Cancer Center; 🇺🇸 Houston, Texas, United States