MyVHL: Patient Natural History Study

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Brief Title

MyVHL: Patient Natural History Study

Official Title

MyVHL: Patient Natural History Study

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.
    



Study Type

Observational [Patient Registry]


Primary Outcome

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.


Condition

Von Hippel-Lindau Disease



Publications

* Includes publications given by the data provider as well as publications identified by National Clinical Trials Identifier (NCT ID) in Medline.

Recruitment Information



Estimated Enrollment

10000

Start Date

January 2012

Completion Date

December 2024

Primary Completion Date

December 2024

Eligibility Criteria

        Inclusion Criteria:

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

        Exclusion Criteria:

        -
      

Gender

All

Ages

N/A - N/A

Accepts Healthy Volunteers

Accepts Healthy Volunteers

Contacts

, 161727756674, [email protected]

Location Countries

United States

Location Countries

United States

Administrative Informations


NCT ID

NCT03749980

Organization ID

0001


Responsible Party

Sponsor-Investigator

Study Sponsor

Ilene Sussman, PhD

Collaborators

 National Organization for Rare Disorders

Study Sponsor

, , 


Verification Date

May 2020