RecruitingNCT03749980

MyVHL: Patient Natural History Study

Sponsor

Joshua Mann, MPH

Enrollment

10,000 participants

Start Date

Jan 1, 2012

Study Type

OBSERVATIONAL

Conditions

Von Hippel-Lindau Disease Hereditary Leiomyomatosis and Renal Cell Cancer Birt-Hogg-Dube Syndrome SDHB Gene Mutation

Summary

MyVHL is a multi-patient database which helps researchers identify patterns across VHL patients. MyVHL provides you -and researchers -with more complete information about VHL, like how your lifestyle, medications, and other factors impact the disease and quality of life. These insights help you better understand the condition and help researchers know where to focus their efforts. Due to its rarity, there is less understanding of VHL and the factors that may have an impact. The data individuals provide in MyVHL helps researchers identify and uncover factors that may increase risk, inhibit or slow tumor growth, or lead to an effective cure.

Eligibility

Plain Language Summary

Simplified for easier understanding

This trial is collecting detailed health information and tracking the natural course of disease in people diagnosed with Von Hippel-Lindau (VHL) disease, a rare inherited condition that can cause tumors to grow in multiple organs including the kidneys, brain, and eyes. **You may be eligible if...** - You have been diagnosed with Von Hippel-Lindau (VHL) disease (a rare genetic condition) - You are willing to participate in a long-term observational study **You may NOT be eligible if...** - You have not been diagnosed with VHL disease - (There are no other exclusion criteria listed for this study) Talk to your doctor to see if this trial is right for you.

This summary was AI-generated to explain the trial in plain language. It is not medical advice. Always discuss eligibility with your doctor before enrolling in a clinical trial.

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Locations(1)

VHL Alliance

Boston, Massachusetts, United States

View Full Details on ClinicalTrials.gov

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NCT03749980

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