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NCT Number: NCT03749980

MyVHL: Patient Natural History Study

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.

Recruiting

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Key information

Conditions

Von Hippel-Lindau Disease Abnormalities, Multiple Angiomatosis Birt-Hogg-Dube Syndrome Cardiovascular Diseases Ciliopathies Congenital Abnormalities Congenital, Hereditary, and Neonatal Diseases and Abnormalities Genetic Diseases, Inborn Hereditary Leiomyomatosis and Renal Cell Cancer Neoplasms Neoplastic Syndromes, Hereditary Nervous System Diseases Neurocutaneous Syndromes SDHB Gene Mutation Vascular Diseases

Sex eligibility

All sexes

Study type

Observational

Primary location

VHL Alliance

Boston, Massachusetts, 02132, United States

Location status: Recruiting

Location contact

Joshua Mann, MPH

CONTACT

[email protected]

617-277-5667 ext. 4

Who can participate

Healthy volunteers accepted: Yes

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

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

Exclusion criteria

-

Treatment and study plan

Primary outcomes

  1. 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.

  2. 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.

Study contacts

Contact information is provided by the study sponsor or research team.

Joshua Mann, MPH

CONTACT

[email protected]

161727756674 ext. 4

Sponsors and collaborators

Lead sponsor

Joshua Mann, MPH

Other

Collaborators

  • National Organization for Rare Disorders

Registry information

Acronym: MyVHL

Important dates

Study start
2012
Primary completion
2028
Study completion
2028
First posted
Nov 21, 2018
Registry last updated
Apr 26, 2024

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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