MyVHL: Patient Natural History Study
Purpose
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.
Conditions
- Von Hippel-Lindau Disease
- Hereditary Leiomyomatosis and Renal Cell Cancer
- Birt-Hogg-Dube Syndrome
- SDHB Gene Mutation
Eligibility
- Eligible Ages
- All ages
- Eligible Sex
- All
- Accepts Healthy Volunteers
- Yes
Inclusion Criteria
- All patients with von Hippel-Lindau Disease (VHL)
Exclusion Criteria
Study Design
- Phase
- Study Type
- Observational [Patient Registry]
- Observational Model
- Cohort
- Time Perspective
- Other
Recruiting Locations
More Details
- Status
- Recruiting
- Sponsor
- Joshua Mann, MPH