MyVHL: Patient Natural History Study

Status

Recruiting

Phases

Unknown

Study type

Observational

Source

ClinicalTrials.gov

Registry ID

NCT03749980

Acronym

MyVHL

Enrollment

10000

Registered

2018-11-21

Start date

2012-01-31

Completion date

2028-12-31

Last updated

2024-04-26

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

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

Keywords

VHL, BHD, HLRCC, SDHB, MyVHL

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.

Interventions

None listed

Study design

Observational model

COHORT

Time perspective

OTHER

Eligibility

Sex/Gender

ALL

Healthy volunteers

Yes

Inclusion criteria

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

Exclusion criteria

Design outcomes

Primary

Measure	Time frame	Description
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.	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.	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.

Countries

United States

Contacts

Primary ContactJoshua Mann, MPH

josh.mann@vhl.org161727756674

Outcome results