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Clinical Trial Details — Status: Recruiting

Administrative data

NCT number NCT03749980
Other study ID # 0001
Secondary ID
Status Recruiting
Phase
First received
Last updated
Start date January 2012
Est. completion date December 2028

Study information

Verified date April 2024
Source VHL Alliance
Contact Joshua Mann, MPH
Phone 161727756674
Email josh.mann@vhl.org
Is FDA regulated No
Health authority
Study type Observational [Patient Registry]

Clinical Trial 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.


Recruitment information / eligibility

Status Recruiting
Enrollment 10000
Est. completion date December 2028
Est. primary completion date December 2028
Accepts healthy volunteers Accepts Healthy Volunteers
Gender All
Age group N/A and older
Eligibility Inclusion Criteria: - All patients with von Hippel-Lindau Disease (VHL) Exclusion Criteria: -

Study Design


Related Conditions & MeSH terms


Locations

Country Name City State
United States VHL Alliance Boston Massachusetts

Sponsors (2)

Lead Sponsor Collaborator
Joshua Mann, MPH National Organization for Rare Disorders

Country where clinical trial is conducted

United States, 

Outcome

Type Measure Description Time frame Safety issue
Primary 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. 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. Through study completion, an average of 1 year.
Primary 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. 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. Through study completion, an average of 1 year.
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