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MyVHL: Patient Natural History Study

Who can join

All ages · All sexes · Healthy volunteers welcome

Inclusion Criteria:

* All patients with von Hippel-Lindau Disease (VHL)

Exclusion Criteria:

\-

About the 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.

Sponsor: Joshua Mann, MPH · Participants: 10,000 · Started: 2012-01

Contact the study team

• Joshua Mann, MPH · Phone: 161727756674

Official record on ClinicalTrials.gov — NCT03749980

Locations in the U.S.

Conditions

• Von Hippel-Lindau Disease

From ClinicalTrials.gov, data retrieved Sep 30, 2026. Each study sets its own eligibility; the study team decides who can join.