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RECRUITING

NCT03749980

MyVHL: Patient Natural History Study

Sponsor: Joshua Mann, MPH

View on ClinicalTrials.gov

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.

Key Details

Gender

All

Age Range

Any - Any

Study Type

OBSERVATIONAL

Enrollment

10000

Start Date

2012-01

Completion Date

2028-12

Last Updated

2024-04-26

Healthy Volunteers

Yes

Conditions

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

Locations (1)

VHL Alliance

Boston, Massachusetts, United States