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NCT03749980RecruitingAccepts Healthy Volunteers

MyVHL: Patient Natural History Study

Joshua Mann, MPH

Start Date

1/1/2012

Completion Date

12/1/2028

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 Criteria

Age Range: No minimum to No maximum

Inclusion Criteria: * All patients with von Hippel-Lindau Disease (VHL) Exclusion Criteria: \-

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Conditions

Von Hippel-Lindau DiseaseHereditary Leiomyomatosis and Renal Cell CancerBirt-Hogg-Dube SyndromeSDHB Gene Mutation

Locations

VHL Alliance

Boston, Massachusetts 02132

United States