Von Hippel Lindau DiseaseNCT05955014
Data Collection Protocol for Patients With Von Hippel Lindau Disease
An observational study of Von Hippel Lindau Disease, run by M.D. Anderson Cancer Center at 1 site in United States.
Trial 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. Read more about this study
- Who is it for?
- Ages 18 years and older
- Conditions the study is for
- Von Hippel Lindau Disease
- How many people
- 125 participants
- Where
- 1 siteUnited States
- Study dates
- 24 Aug 2023to 31 Dec 2026
- Phase
- Observational
- Are there results?
- Not yet: the study is under way
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 18 years and older
- All sexes
- No healthy volunteers
- Adult, Older adult
Study population: M D Anderson Cancer Center
Who may be able to join
- Presence of genetic confirmation or clinical criteria consistent with vHL disease.
- Ability to understand and the willingness to sign a written informed consent document.
Who cannot join
- Patients with psychiatric illness/social situations that would limit compliance with study requirements.
Trial locations and contacts
1 site in 1 country. Contact the study team or a site near you to ask about taking part.
United States1 site, 1 recruiting
- Recruiting
M D Anderson Cancer Center
Houston, Texas, 77030
Eric Jonasch, MD, 713-563-7232, ejonasch@mdanderson.org
Eric Jonasch, MD
About this 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.
Read the detailed description
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
- Von Hippel Lindau Disease
- Medical subject headings
- von Hippel-Lindau Disease
What is being measured
The primary outcome is the main question the study is designed to answer.
Progression-free survival (PFS)
Measured: through study completion; an average of 1 year
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted20 Jul 2023
- Study start24 Aug 2023
- Primary completion31 Dec 2026 (estimated)
- Study completion31 Dec 2026 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Von Hippel Lindau DiseaseStudies of the same condition, open and under way.
- More trials run by M.D. Anderson Cancer CenterThe sponsor's other registered studies.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Cohort
- Time perspective
- Other
- Enrolment
- 125 participants (estimated)
Sponsor and investigators
- Lead sponsor
- M.D. Anderson Cancer Center
- Sponsor type
- University, hospital or other
- Responsible party
- Sponsor
- Investigators
- Eric Jonasch, MD, Principal investigator, ejonasch@mdanderson.org
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT05955014
- Sponsor's protocol ID
- 2022-0665
- Other IDs
- NCI-2023-05216
- Status last verified
- Jun 2026
- First submitted
- 10 Jul 2023
- Last updated
- 26 Jun 2026
- Results posted
- No
- Data monitoring committee
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
Study at a glance
From the registry record, last updated by the sponsor on 26 Jun 2026. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Data Collection Protocol for Patients With Von Hippel Lindau Disease
- ClinicalTrials.gov ID
- NCT05955014
- Acronym / sponsor ID
- 2022-0665
- Conditions
- Von Hippel Lindau Disease
- Study type
- Observational
- Recruitment status
- Recruiting
- Enrolment
- 125 participants (estimated)
- Lead sponsor
- M.D. Anderson Cancer CenterUniversity, hospital or other
- Study start
- 24 Aug 2023 (actual)
- Primary completion
- 31 Dec 2026 (estimated)
- Study completion
- 31 Dec 2026 (estimated)
- First posted
- 20 Jul 2023 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
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
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
Study design
- Observational model
- Cohort
- Time perspective
- Other
Who may qualify
- Ages
- 18 years and older
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Adult, Older adult
- Study population
- M D Anderson Cancer Center
Key inclusion criteria (2 listed)
- Presence of genetic confirmation or clinical criteria consistent with vHL disease.
- Ability to understand and the willingness to sign a written informed consent document.
Key exclusion criteria (1 listed)
- Patients with psychiatric illness/social situations that would limit compliance with study requirements.
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Primary outcome
Progression-free survival (PFS)
Time frame: through study completion; an average of 1 year
Results and safety
This study is still under way. Results are not available in the source record yet.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 26 Jun 2026.
- M D Anderson Cancer CenterLink provided by the sponsor.
Related trials for Von Hippel Lindau Disease
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Belzutifan VHL RCC HK Prospective Registry
VHL - Von Hippel-Lindau Syndrome
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Belzutifan/MK-6482 for the Treatment of Advanced Pheochromocytoma/Paraganglioma (PPGL), Pancreatic Neuroendocrine Tumor (pNET), Von Hippel-Lindau (VHL) Disease-Associated Tumors, Advanced Gastrointestinal Stromal Tumor (wt GIST), or Solid Tumors With HIF-2α Related Genetic Alterations (MK-6482-015)
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RecruitingPhase 3
Extension Study for Participants in Studies That Include Belzutifan (MK-6482-043/LITESPARK-043)
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part.
Eric Jonasch, MD principal investigator
ejonasch@mdanderson.org
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Von Hippel Lindau Disease, run by M.D. Anderson Cancer Center at 1 site in United States.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 2 inclusion and 1 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: looking for participants now, as of the sponsor's last update on 26 Jun 2026. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in United States. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
This study is still under way. Results are not available in the source record yet.
How can a doctor refer a patient or contact the research team?
Contact Eric Jonasch, MD ((713) 563-7232, ejonasch@mdanderson.org), or a site near the patient. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Progression-free survival (PFS) (time frame: through study completion; an average of 1 year). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 26 Jun 2026; AzTrials last refreshed its copy on 1 Nov 2026.