MyVHL: Patient Natural History Study

Part of paid clinical trials in Boston, Massachusetts.

Sponsor
Joshua Mann, MPH
Study ID
NCT03749980
Status
Recruiting
Apply to this trial

Conditions

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

Eligibility Criteria

Sex
ALL
Age
N/A - N/A
Healthy Volunteers
Accepted

Study Details

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 Dates

Start date
Jan 31, 2012
Status verified
Apr 2024
Primary completion
Dec 31, 2028
Completion
Dec 31, 2028

Study Design

Enrollment
10,000 participants (estimated)

Primary Outcome Measure

Number of patients with CNS, kidney, adrenal, retinal, thyroid, ear, and pancreatic tumors, along with cystadenomas and lesions in the lungs, liver and skin, as they relate to VHL, BHD, HLRCC, and SDHB and specific genetic mutation. [ Time Frame: Through study completion, an average of 1 year. ]

Central Contacts

Locations (1)

FacilityCityStateZIPSite coordinators
VHL AllianceBostonMassachusetts02132
Joshua Mann, MPH
[email protected]
617-277-5667

Find similar trials in Boston, MA

By research site
VHL Alliance· Boston, MA

Related Studies