MyVHL: Patient Natural History Study

Recruiting now

Conditions studied: Von Hippel-Lindau Disease, Hereditary Leiomyomatosis and Renal Cell Cancer, Birt-Hogg-Dube Syndrome, SDHB Gene Mutation

In brief

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.

Key facts

Study ID

NCT03749980

Run by

Joshua Mann, MPH

People needed

10000

Starts

2012-01-01

Expected to finish

2028-12-01

Last updated by the study team

2024-04-26

Who can join

Age: any. Sex: any. Healthy volunteers: accepted.

You may qualify if…

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

Where it is running

• VHL Alliance — Boston, Massachusetts, United States (enrolling)

Full record on ClinicalTrials.gov

Trial information comes from ClinicalTrials.gov and is refreshed daily. TrialsForMe does not provide medical care and does not run the studies it lists.