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Study identifier: NCT03749980 Synced from ClinicalTrials.gov · July 28, 2026
● Recruiting

MyVHL: Patient Natural History Study

Condition: Von Hippel-Lindau Disease · Hereditary Leiomyomatosis and Renal Cell Cancer · Birt-Hogg-Dube Syndrome  ·  Sponsor: Joshua Mann, MPH

PhaseN/A
Planned participants10000
Who can joinAll sexes, N/A to no upper limit
Healthy volunteersYes

About this study

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.

This description comes directly from the study's public registry record.

Talk to the study team

Joshua Mann, MPH  ·  161727756674  ·  josh.mann@vhl.org

Always discuss trial participation with your own doctor first.

Locations (1)

VHL AllianceBoston, Massachusetts, United StatesRecruiting

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Source record: clinicaltrials.gov/study/NCT03749980