NCT05955014

Brief Summary

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.

Trial Health

77
On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
125

participants targeted

Target at P50-P75 for all trials

Timeline
8mo left

Started Aug 2023

Typical duration for all trials

Geographic Reach
1 country

1 active site

Status
recruiting

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

Study Progress81%
Aug 2023Dec 2026

First Submitted

Initial submission to the registry

July 10, 2023

Completed
10 days until next milestone

First Posted

Study publicly available on registry

July 20, 2023

Completed
1 month until next milestone

Study Start

First participant enrolled

August 24, 2023

Completed
3.4 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

December 31, 2026

Expected
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

December 31, 2026

Last Updated

November 20, 2025

Status Verified

November 1, 2025

Enrollment Period

3.4 years

First QC Date

July 10, 2023

Last Update Submit

November 17, 2025

Conditions

Von Hippel Lindau Disease

Outcome Measures

Primary Outcomes (1)

  • Progression-free survival (PFS)

    through study completion; an average of 1 year

Eligibility Criteria

Age18 Years+
Sexall
Healthy VolunteersNo
Age GroupsAdult (18-64), Older Adult (65+)
Sampling MethodNon-Probability Sample
Study Population

M D Anderson Cancer Center

You may qualify if:

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

You may not qualify if:

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

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (1)

M D Anderson Cancer Center

Houston, Texas, 77030, United States

RECRUITING

Related Links

MeSH Terms

Conditions

von Hippel-Lindau Disease

Condition Hierarchy (Ancestors)

Neurocutaneous SyndromesNervous System DiseasesAngiomatosisVascular DiseasesCardiovascular DiseasesCiliopathiesAbnormalities, MultipleCongenital AbnormalitiesCongenital, Hereditary, and Neonatal Diseases and AbnormalitiesGenetic Diseases, Inborn

Study Officials

  • Eric Jonasch, MD

    ejonasch@mdanderson.org

    PRINCIPAL INVESTIGATOR

Central Study Contacts

Eric Jonasch, MD

CONTACT

(713) 563-7232ejonasch@mdanderson.org

Study Design

Study Type
observational
Observational Model
COHORT
Time Perspective
OTHER
Sponsor Type
OTHER
Responsible Party
SPONSOR

Study Record Dates

First Submitted

July 10, 2023

First Posted

July 20, 2023

Study Start

August 24, 2023

Primary Completion (Estimated)

December 31, 2026

Study Completion (Estimated)

December 31, 2026

Last Updated

November 20, 2025

Record last verified: 2025-11

Locations

US(1)