MyVHL: Patient Natural History Study
Status: Recruiting
Location: See location...
Study Type: Observational
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
Participation Requirements
Sex: All
Healthy Volunteers: t
View:
• All patients with von Hippel-Lindau Disease (VHL)
Locations
United States
Massachusetts
VHL Alliance
RECRUITING
Boston
Contact Information
Primary
Joshua Mann, MPH
josh.mann@vhl.org
161727756674
Time Frame
Start Date: 2012-01
Estimated Completion Date: 2028-12
Participants
Target number of participants: 10000
Related Therapeutic Areas
Sponsors
Leads: Joshua Mann, MPH
Collaborators: National Organization for Rare Disorders