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MyVHL: Patient Natural History Study

Study acronym: MyVHL
StatusRecruiting
PhaseNot specified
Started
View on ClinicalTrials.gov ↗

Record History

  1. Primary and study completion dates: Dec 2024 to Dec 2028v5
  2. Re-verified, no change to tracked fieldsv4
  3. Lead sponsor: Ilene Sussman, PhD to Joshua Mann, MPHv3
  4. Re-verified, no change to tracked fieldsv2
  5. Study First Submitted
  • Stopped: an ongoing trial was terminated, suspended or withdrawn.
  • Notable: the trial’s plan changed such as a big move in its timeline or size, a new primary endpoint, sponsor or phase, or recruiting opened or resumed.
  • Minor: routine progress and housekeeping, such as sites added or enrollment closed.
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.
Trial Details
NCT Number NCT03749980
Lead Sponsor Joshua Mann, MPH
Collaborators: National Organization for Rare Disorders
Conditions
(from sponsor)		 Von Hippel-Lindau Disease, Hereditary Leiomyomatosis and Renal Cell Cancer, Birt-Hogg-Dube Syndrome, SDHB Gene Mutation
Related terms Birt-Hogg-Dube Syndrome, Hereditary leiomyomatosis and renal cell cancer, von Hippel-Lindau Disease
Enrollment 10,000 participants
Start Date
Primary Completion (estimated)
Study Completion (estimated)
Updated on ClinicalTrials.gov