MyVHL: Patient Natural History Study
Joshua Mann, MPH · with National Organization for Rare Disorders · NCT03749980
Opens the official ClinicalTrials.gov record, with the study team’s contacts. Bored Studies doesn’t enroll anyone.
Key facts
- Compensation
- Not posted. Ask the study team before screening.
- Who can join
- Any age listed · All sexes
- Healthy volunteers
- Accepted
- Study type
- Observational
- Target enrollment
- 10000
- US sites recruiting
- 1
- Study start
- January 2012
- Record last updated
- April 26, 2024
Status re-checked against ClinicalTrials.gov within the last 12 hours.
What the study is about
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 criteria
Copied from the official record. The study team makes the final decision at screening.
Show full criteria
Inclusion Criteria
- All patients with von Hippel-Lindau Disease (VHL)
Exclusion Criteria
-
Recruiting US locations
VHL Alliance
Boston, MA 02132
Site contact: Joshua Mann, MPH · 617-277-5667 · josh.mann@vhl.org
Study contacts (from the official record)
- Joshua Mann, MPH · 161727756674 · josh.mann@vhl.org
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