UPCC 02824 Data Collection Protocol for Patients with von Hippel Lindau Disease

Study on Von Hippel Lindau Disease Data Collection

Enrolling By Invitation
18 years or above
All
Phase N/A
125 participants needed
1 Location

Brief description of study

To collect information from patients with vHL disease. Information collected will include data on the status of the disease, any surgeries or therapies patients have received for vHL disease, and quality of life.

Detailed description of study

Primary Objectives:

  • Obtain prospective and retrospective data on lesion development, surgical history and systemic therapy use in patients with vHL disease
  • Assess genotype-phenotype correlation between VHL mutation type and patterns of lesion development
  • Assess genotype-phenotype correlation for response to belzutifan in an organ-specific manner

Secondary Objectives:

--Obtain quality of life data in patients with vHL disease

Eligibility of study

You may be eligible for this study if you meet the following criteria:

  • Conditions: Von Hippel Lindau Disease
  • Age: 18 years or above
  • Gender: All

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.

This study investigates Von Hippel Lindau (vHL) disease, focusing on data collection regarding disease progression, surgeries or therapies patients have undergone, and their quality of life. The study also aims to understand how different genetic mutations in vHL are linked to the development of lesions and response to treatments.

Participants will provide information about their medical history, including any surgeries and therapies they have received. The study will also collect data on their quality of life. This information will help researchers understand the relationship between genetic mutations and the disease's progression.

  • Who can participate: Individuals with a genetic confirmation or clinical diagnosis of vHL disease are eligible to participate. Participants must be able to understand and willing to sign a consent form.
  • Study details: Participants will be required to share their medical history, including any treatments and surgeries related to vHL disease. They will also provide information on their quality of life.
Updated on 26 Jun 2026. Study ID: 24-0186
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Study is selecting its participants from a population, or group of people, decided on by the researchers in advance.

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