MyVHL: Patient Natural History Study

Joshua Mann, MPH

Status: Enrolling

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

Study type: Observational

Funder types: Other

Identifiers

NCT03749980

0001

Details and patient eligibility

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.

Enrollment: 10,000 estimated patients

Sex: All

Volunteers: Accepts Healthy Volunteers

Inclusion criteria

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

Exclusion criteria