Data Collection Protocol for Patients With Von Hippel Lindau Disease

NCT ID: NCT05955014

Last Updated: 2025-11-20

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Total Enrollment

125 participants

Study Classification

OBSERVATIONAL

Study Start Date

2023-08-24

Study Completion Date

2026-12-31

Brief Summary

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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

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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

Conditions

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Von Hippel Lindau Disease

Study Design

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Observational Model Type

COHORT

Study Time Perspective

OTHER

Eligibility Criteria

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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.
Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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M.D. Anderson Cancer Center

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Eric Jonasch, MD

Role: PRINCIPAL_INVESTIGATOR

[email protected]

Locations

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M D Anderson Cancer Center

Houston, Texas, United States

Site Status RECRUITING

Countries

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United States

Central Contacts

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Eric Jonasch, MD

Role: CONTACT

(713) 563-7232

Facility Contacts

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Eric Jonasch, MD

Role: primary

713-563-7232

Related Links

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http://www.mdanderson.org

M D Anderson Cancer Center

Other Identifiers

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NCI-2023-05216

Identifier Type: OTHER

Identifier Source: secondary_id

2022-0665

Identifier Type: -

Identifier Source: org_study_id

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