Back to search results

MyVHL: Understanding Von Hippel-Lindau Disease and Related Conditions

This is an observational study called MyVHL, which means researchers will collect information about your health over time rather than testing a new treatment. The goal is to create a large database to better understand rare conditions like Von Hippel-Lindau Disease (VHL), Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC), Birt-Hogg-Dube Syndrome (BHD), and SDHB Gene Mutation. By gathering details about your lifestyle, medications, and how these conditions affect you, researchers hope to identify patterns. This information can help them understand what might increase risk, slow tumor growth, or even lead to a cure. The study aims to track the number and size of various tumors and lesions in different parts of the body, relating them to your specific condition and genetic mutation.

Study design
This is an observational study with a planned enrollment of 10,000 participants. It is designed to collect information over an average of one year.
What's involved
Not specified in the trial record.
Compensation
Not stated in the trial record.
Follow-up
Participants will be followed through study completion, which is an average of one year.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT03749980

MyVHL: Patient Natural History Study

Recruiting
Not specifiedAll AgesObservational
Joshua Mann, MPH
~10,000 participants
Updated 2024-04-26 on ClinicalTrials.gov

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
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.
Measured over Through study completion, an average of 1 year.
+1 more outcome measured

Conditions

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

Explore related trials

Birt-Hogg-Dube SyndromeHereditary Leiomyomatosis and Renal Cell CarcinomaHereditary Paraganglioma-Pheochromocytoma SyndromeVon Hippel Lindau SyndromeSuccinate Dehydrogenase [Ubiquinone] Iron-Sulfur Subunit, MitochondrialVon Hippel-Lindau Disease Tumor Suppressor

NCT03749980

Where you'd take part

This study runs at 1 site. They're the same protocol — you choose where, and that choice sets who your contact draft is addressed to.

  • VHL Alliance

    Boston, Massachusettsstudy coordinator listed

    Recruiting

Sites open and close at different times, so the status above is per site — it can differ from the study's overall status.

Study leadership

  • Joshua Mann, MPH · PRINCIPAL_INVESTIGATOR · VHL Alliance

Who to contact

Joshua Mann, MPH
[email protected]
161727756674 · ext. 4
Email the study team

Opens a ready-to-send draft in your own email app — review before sending.

Want this trial checked against your situation?

Add a private profile and we'll compare every criterion below against your situation — and tell you which ones are met, uncertain, or excluding.

Check eligibility for this trial ~2 min · HIPAA-protected · delete anytime
Eligibility criteria

Inclusion

All patients with von Hippel-Lindau Disease (VHL)

What this trial measures

  • 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.