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NCT Number: NCT05955014

Data Collection Protocol for Patients With Von Hippel Lindau Disease

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.

Recruiting

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Key information

Conditions

Von Hippel Lindau Disease Abnormalities, Multiple Angiomatosis Cardiovascular Diseases Ciliopathies Congenital Abnormalities Congenital, Hereditary, and Neonatal Diseases and Abnormalities Genetic Diseases, Inborn Nervous System Diseases Neurocutaneous Syndromes Vascular Diseases von Hippel-Lindau Disease

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

M D Anderson Cancer Center

Houston, Texas, 77030, United States

Location status: Recruiting

Location contact

Eric Jonasch, MD

CONTACT

[email protected]

713-563-7232

Eric Jonasch, MD

PRINCIPAL_INVESTIGATOR

About this 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

Who can participate

Healthy volunteers accepted: No

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

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.

Treatment and study plan

Primary outcomes

  1. Progression-free survival (PFS)

    Time frame: through study completion; an average of 1 year

Study contacts

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

Eric Jonasch, MD

CONTACT

[email protected]

(713) 563-7232

Sponsors and collaborators

Lead sponsor

M.D. Anderson Cancer Center

Other

Registry information

Important dates

Study start
2023
Primary completion
2026
Study completion
2026
First posted
Jul 20, 2023
Registry last updated
Jun 26, 2026

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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