Recruiting

Observational Study

Sponsor:

Joshua Mann, MPH

Code:

NCT03749980

Conditions

Von Hippel-Lindau Disease

Hereditary Leiomyomatosis and Renal Cell Cancer

Birt-Hogg-Dube Syndrome

SDHB Gene Mutation

Eligibility Criteria

Sex: All

Age: 0+

Healthy Volunteers: Accepted

Study Details

Brief summary:

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

Study ID

NCT03749980

Start date

Jan, 2012

Status verified date

Apr, 2024

Completion date

Dec, 2028

Anticipated

Primary completion date

Dec, 2028

Anticipated

Eligibility Criteria

Eligibility Criteria

Sex: All

Age: 0+

Healthy Volunteers: Accepted

Inclusion Criteria:

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

Exclusion Criteria:

-

Study Design

Enrollment

10000 participants

Anticipated

Interventions and Outcome Measures

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. ]
  • Size of tumors in 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 and Locations

Central contacts

Joshua Mann, MPH

161727756674josh.mann@vhl.org

Locations

VHL Alliance

Recruiting

Boston, Massachusetts, United States, 02132

Contacts

Joshua Mann, MPH

617-277-5667josh.mann@vhl.org

More Information

Sponsor

Joshua Mann, MPH

Last update posted

Apr 26, 2024

Last verified

Apr, 2024

Keywords

  • VHL
  • BHD
  • HLRCC
  • SDHB
  • MyVHL

Trial information was received from ClinicalTrials.gov and was last updated on 2026-09-09. This information was provided to ClinicalTrials.gov by Joshua Mann, MPH on 2024-04-26.