Registry for patients with NF1-associated glioma
Official title: Glioma Developmental and HyperActive Ras Tumor (DHART) Board
Run by Memorial Sloan Kettering Cancer Center · NCT05489783 · Data updated 2026-11-12
This study is creating a registry to collect information from people with neurofibromatosis type 1 and glioma to see how the disease and its treatments affect their lives over time.
Quick facts
| Study type | Observational |
|---|---|
| Ages | 18 Years and up |
| Sex | All |
| Enrollment | 50 (estimated) |
| Sponsor | Memorial Sloan Kettering Cancer Center Academic / other |
| Locations | 7 sites (Basking Ridge, New Jersey and 6 other locations) |
| Status | Recruiting |
| Started | July 29, 2022 |
| Main results expected | July 31, 2027 |
| Study ends | July 31, 2027 |
| Registry record updated | August 31, 2026 |
| Trial ID | NCT05489783 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates for this study are individuals aged 18 and older with a clinical diagnosis of neurofibromatosis type 1 and a confirmed glioma.
✕Probably not a fit
Patients who are unwilling to provide informed consent or do not speak English or Spanish may not benefit from this study.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This observational study aims to create a comprehensive registry of individuals diagnosed with neurofibromatosis type 1-associated glioma. Researchers will collect medical records, scan results, and surveys to gather information on diagnosis, treatment, and quality of life over time. The goal is to understand the impact of various treatments and the disease itself on patients' lives, which could ultimately influence future diagnostic and treatment approaches for NF1-associated glioma.
Why it matters
Potential benefit: If successful, this registry could lead to improved diagnosis and treatment strategies for patients with NF1-associated glioma.
How similar studies have gone: Other studies focusing on registries for specific cancer types have shown success in improving patient outcomes and treatment protocols.
Who can join: the full rules
Show full inclusion / exclusion criteria
Inclusion Criteria: * Clinical diagnosis that meets NIH criteria for NF1 disease by either 1) documented clinical record establishing NF1 or 2) self-reported with supported documentation upon medical record collection. * Willing to have historical and future NF1 related health records sent to registry for review. * Radiologic or pathologically confirmed glioma. * Individuals ≥18 years of age on the date of informed consent. Exclusion Criteria: * Unwillingness to sign informed consent. * No proficiency in English or Spanish as determined by the Investigator.
Where it's running
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Memorial Sloan Kettering Basking Ridge (All Protocol Activities)
Basking Ridge, New Jersey, United States Recruiting -
Memorial Sloan Kettering Monmouth (All protocol activities)
Middletown, New Jersey, United States Recruiting -
Memorial Sloan Kettering Bergen (All Protocol Activities)
Montvale, New Jersey, United States Recruiting -
Memorial Sloan Kettering Suffolk - Commack (All Protocol Activities)
Commack, New York, United States Recruiting -
Memorial Sloan Kettering West Harrison (All Protocol Activities)
Harrison, New York, United States Recruiting -
Memorial Sloan Kettering Cancer Center (All Protocol Activities)
New York, New York, United States Recruiting
Show 1 more location
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Memorial Sloan Kettering Nassau (All Protocol Activities)
Rockville Centre, New York, United States Recruiting
Study contacts
- Principal investigator: Anna Piotrowski — Memorial Sloan Kettering Cancer Center
- Study coordinator: Anna Piotrowski, MD
- Email: piotrowa@mskcc.org
- Phone: 212-610-0483
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
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YN003 injection in glioma patients
This phase 1 study tests whether YN003 injected IV is safe and tolerable for adults with recurrent or progressive glioma, and to explore how the drug behaves in the body and any early signs of activity.
-
Brain connectome project in adults with brain glioma undergoing surgery
This registry collects MRI data and clinical information from adults with glioma to see how brain networks relate to surgery and recovery.
-
Proton vs. Photon Radiation for Certain Grade 2–3 Gliomas
This study tests whether proton therapy can better preserve thinking and memory than photon therapy for adults with IDH-mutated grade 2–3 gliomas who need radiation.
-
Connectome-guided network planning for brain tumor surgery in eloquent areas
This study tests whether using patient-specific brain network maps from diffusion MRI can help surgeons plan and guide brain tumor removal in eloquent areas.
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AI-powered analysis of brain MRI to help glioma care
Doctors will use AI to study existing MRI scans and patient data from adults with glioma to see if it can help with non-invasive diagnosis and treatment planning.
-
Safusidenib in IDH1-mutant glioma after vorasidenib progression
This trial tests safusidenib in people with IDH1-mutant glioma who progressed on vorasidenib and did not need immediate chemo or radiation.
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.