Actively Recruiting
Data Collection Protocol for Patients With Von Hippel Lindau Disease
Led by M.D. Anderson Cancer Center · Updated on 2025-11-20
125
Participants Needed
1
Research Sites
N/A
Total Duration
On this page
AI-Summary
What this Trial Is About
Researchers are collecting information from patients with Von Hippel Lindau (vHL) disease to better understand how the disease develops and affects quality of life. This study aims to gather both past and ongoing data about lesions, surgeries, and systemic treatments. It also explores how different genetic mutations relate to disease patterns and response to a specific treatment called belzutifan. Participants will provide data on their disease status, surgical history, and any treatments received. The study looks at genetic and clinical information to assess lesion development and treatment response by organ type. Quality of life information is also collected to understand the impact of vHL disease from the patient's perspective. During the study, participants will be monitored for disease progression, with progression-free survival tracked for about one year on average. This observational study involves ongoing data collection through clinical records and patient reports. Participation includes signing consent and may involve providing medical history and quality of life assessments. The study is sponsored by M.D. Anderson Cancer Center and runs until the end of 2026.
CONDITIONS
Brief Title
Data Collection Protocol for Patients With Von Hippel Lindau Disease
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Have genetic confirmation or meet clinical criteria consistent with Von Hippel Lindau disease
- Are willing and able to sign a written informed consent document
You will not qualify if you...
- Have psychiatric illness or social situations that would limit compliance with study requirements
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person)
Duration - Through study completion; an average of 1 year
Participants who have genetic confirmation or meet clinical criteria consistent with Von Hippel Lindau disease are observed for lesion development, surgical history, systemic therapy use, and quality of life data.
Visits scheduled as per routine clinical care and data collection needs
Trial Site Locations
Total: 1 location
1
M D Anderson Cancer Center
Houston, Texas, United States, 77030
Actively Recruiting
Research Team
E
Eric Jonasch, MD
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
0
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