A database to understand von Hippel-Lindau Disease and related conditions

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

MyVHL is an observational study that creates a multi-patient database to identify patterns among individuals with von Hippel-Lindau Disease and related conditions. Participants provide information about their lifestyle, medications, and other factors that may influence their disease and quality of life. This data helps researchers uncover risk factors, understand tumor growth, and potentially identify effective treatments. The study aims to enhance knowledge about these rare conditions and guide future research efforts.

Why it matters

Who can join: the full rules

Inclusion Criteria:

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

Exclusion Criteria:

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Where it's running

• VHL Alliance
  Boston, Massachusetts, United States Recruiting

Study contacts

• Principal investigator: Joshua Mann, MPH — VHL Alliance
• Study coordinator: Joshua Mann, MPH
• Email: josh.mann@vhl.org
• Phone: 161727756674

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

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• Extension program for people previously treated with belzutifan (MK-6482)

  This extension lets people with advanced solid tumors or VHL-related tumors who were already taking belzutifan in another study continue the drug so researchers can see how long they live and watch for long-term effects.

  Recruiting at 50 sites Phase 3 Merck Sharp & Dohme LLC · Boston, Massachusetts and 56 other locations · NCT07405164

• Real-world belzutifan outcomes and pharmacogenetics in von Hippel-Lindau syndrome

  This study will test belzutifan in people aged 14 and older with VHL syndrome to see how well it controls VHL-associated tumors, what side effects occur, and how genetic factors affect response.

  Recruiting Phase 2 AC Camargo Cancer Center · São Paulo, São Paulo · NCT07167329

• Registry for Rare Diseases

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• Understanding genetic causes of neuroendocrine tumors in Mexican patients

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• Understanding reproductive counseling for patients with skin genetic disorders

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  Recruiting Maastricht University Medical Center · Maastricht, Limburg · NCT06330350

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.