Collecting data from patients with Von Hippel Lindau Disease
Data Collection Protocol for Patients With Von Hippel Lindau Disease
This study is collecting information from people with Von Hippel Lindau disease to see how their specific genetic changes affect their health and treatment responses, including how they feel in their daily lives.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 125 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | M.D. Anderson Cancer Center Academic / other |
| Locations | 1 site (Houston, Texas) |
| Trial ID | NCT05955014 on ClinicalTrials.gov |
What this trial studies
This observational study aims to gather comprehensive information from patients diagnosed with Von Hippel Lindau (vHL) disease. It will collect both prospective and retrospective data regarding lesion development, surgical history, and systemic therapies utilized by patients. Additionally, the study will explore the correlation between specific VHL mutations and the patterns of lesion development, as well as the response to the treatment belzutifan. Quality of life metrics will also be assessed to understand the impact of the disease on patients' daily lives.
Who should consider this trial
Good fit: Ideal candidates include individuals with a confirmed genetic diagnosis or clinical criteria consistent with Von Hippel Lindau disease.
Not a fit: Patients with psychiatric illnesses or social situations that hinder compliance with study requirements may not benefit from this study.
Why it matters
Potential benefit: If successful, this study could enhance understanding of vHL disease and improve patient management strategies.
How similar studies have performed: While this study focuses on data collection, similar observational studies have successfully contributed to understanding genetic diseases and their management.
Eligibility criteria
Show full inclusion / exclusion criteria
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.
Where this trial is running
Houston, Texas
- M D Anderson Cancer Center — Houston, Texas, United States (Recruiting)
Study contacts
- Principal investigator: Eric Jonasch, MD — ejonasch@mdanderson.org
- Study coordinator: Eric Jonasch, MD
- Email: ejonasch@mdanderson.org
- Phone: (713) 563-7232
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.