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Brief Title: MyVHL: Patient Natural History Study
Official Title: MyVHL: Patient Natural History Study
Study ID: NCT03749980
Brief 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.
Detailed Description:
Minimum Age:
Eligible Ages: CHILD, ADULT, OLDER_ADULT
Sex: ALL
Healthy Volunteers: Yes
VHL Alliance, Boston, Massachusetts, United States
Name: Joshua Mann, MPH
Affiliation: VHL Alliance
Role: PRINCIPAL_INVESTIGATOR