MyVHL: Patient Natural History Study

Von Hippel-Lindau Disease Clinical Trial

— MyVHL  

Official title:

MyVHL: Patient Natural History Study

Clinical Trial Details — Status: Recruiting

Administrative data

• NCT number: NCT03749980
• Other study ID #: 0001
• Status: Recruiting
• 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
• 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: -

Related Conditions & MeSH terms

• Birt-Hogg-Dube Syndrome
• Carcinoma, Renal Cell
• Hereditary Leiomyomatosis and Renal Cell Cancer
• Leiomyomatosis
• SDHB Gene Mutation
• Von Hippel-Lindau Disease

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.