RecruitingNCT03749980

MyVHL: Patient Natural History Study


Sponsor

Joshua Mann, MPH

Enrollment

10,000 participants

Start Date

Jan 1, 2012

Study Type

OBSERVATIONAL

Conditions

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

Inclusion Criteria1

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

Exclusion Criteria1

  • \-

Locations(1)

VHL Alliance

Boston, Massachusetts, United States

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NCT03749980


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