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MyVHL: Patient Natural History Study

RECRUITINGSponsored by Joshua Mann, MPH
Actively Recruiting
SponsorJoshua Mann, MPH
Started2012-01
Est. completion2028-12
Eligibility
Healthy vol.Accepted
Locations1 site
View on ClinicalTrials.gov →

NCT03749980

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

Healthy volunteers accepted
Inclusion Criteria:

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

Exclusion Criteria:

\-

Conditions5

Birt-Hogg-Dube SyndromeCancerHereditary Leiomyomatosis and Renal Cell CancerSDHB Gene MutationVon Hippel-Lindau Disease

Locations1 site

VHL Alliance
Boston, Massachusetts, 02132
Joshua Mann, MPH617-277-5667josh.mann@vhl.org

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Trial data from ClinicalTrials.gov. Trial status and eligibility can change — verify directly with the study contact or on ClinicalTrials.gov.

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