Registry for patients with NF1-associated glioma
Glioma Developmental and HyperActive Ras Tumor (DHART) Board
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 |
|---|---|
| Enrollment | 50 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | Memorial Sloan Kettering Cancer Center Academic / other |
| Locations | 7 sites (Basking Ridge, New Jersey and 6 other locations) |
| Trial ID | NCT05489783 on ClinicalTrials.gov |
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.
Who should consider this trial
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.
Not a fit: Patients who are unwilling to provide informed consent or do not speak English or Spanish may not benefit from this study.
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 performed: Other studies focusing on registries for specific cancer types have shown success in improving patient outcomes and treatment protocols.
Eligibility criteria
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 this trial is running
Basking Ridge, New Jersey and 6 other locations
- 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)
- 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
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.