Collecting data from patients with Von Hippel Lindau Disease

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

This observational study aims to gather comprehensive information from patients diagnosed with Von Hippel Lindau (vHL) disease. It will collect both prospective and retrospective data regarding lesion development, surgical history, and systemic therapies utilized by patients. Additionally, the study will explore the correlation between specific VHL mutations and the patterns of lesion development, as well as the response to the treatment belzutifan. Quality of life metrics will also be assessed to understand the impact of the disease on patients' daily lives.

Why it matters

Who can join: the full rules

Inclusion Criteria:

* Presence of genetic confirmation or clinical criteria consistent with vHL disease.
* Ability to understand and the willingness to sign a written informed consent document.

Exclusion Criteria:

• Patients with psychiatric illness/social situations that would limit compliance with study requirements.

Where it's running

• M D Anderson Cancer Center
  Houston, Texas, United States Recruiting

Study contacts

• Principal investigator: Eric Jonasch, MD — ejonasch@mdanderson.org
• Study coordinator: Eric Jonasch, MD
• Email: ejonasch@mdanderson.org
• Phone: (713) 563-7232

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)

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• 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

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  Recruiting at 3 sites Universidad Nacional Autonoma de Mexico · Mexico City, Mexico City and 2 other locations · NCT06523582

• Analyzing genetic mutations in kidney cells of patients with Von Hippel-Lindau disease

  This study looks at whether kidney cells from people with Von Hippel-Lindau disease have more genetic changes compared to those without the condition.

  Recruiting IRCCS San Raffaele · Milan · NCT06194669

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.