MyVHL: Patient Natural History Study

Overview

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.

Study Type

  • Study Type: Observational [Patient Registry]
  • Study Design
    • Time Perspective: Other
  • Study Primary Completion Date: December 2024

Clinical Trial Outcome Measures

Primary Measures

  • 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.
    • Data regarding changes in number of CNS, kidney, adrenal, retinal, ear, and pancreatic tumors, along with cystadenomas and lesions in the lungs, liver and skin, over a lifetime.
  • 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.
    • Data regarding changes in size of CNS, kidney, adrenal, retinal, ear, and pancreatic tumors, along with cystadenomas and lesions in the lungs, liver and skin, over a lifetime.

Participating in This Clinical Trial

Inclusion Criteria

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

-

Gender Eligibility: All

Minimum Age: N/A

Maximum Age: N/A

Are Healthy Volunteers Accepted: Accepts Healthy Volunteers

Investigator Details

  • Lead Sponsor
    • Joshua Mann, MPH
  • Collaborator
    • National Organization for Rare Disorders
  • Provider of Information About this Clinical Study
    • Sponsor-Investigator: Joshua Mann, MPH, Director of Health – VHL Alliance
  • Overall Official(s)
    • Joshua Mann, MPH, Principal Investigator, VHL Alliance
  • Overall Contact(s)
    • Joshua Mann, MPH, 161727756674, josh.mann@vhl.org

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