Glioma Developmental and HyperActive Ras Tumor (DHART) Board
- Conditions
- Glioma
- Registration Number
- NCT05489783
- Lead Sponsor
- Memorial Sloan Kettering Cancer Center
- Brief Summary
This study will collect medical records, scan results, and complete surveys to create a registry about people with a neurofibromatosis type 1-associated brain tumor (NF1-associated glioma). A registry is a collection of health information about individuals, and it is usually focused on a specific diagnosis or condition.
This registry study will help the researchers learn more about the diagnosis, treatment, and quality of life of people with NF1-associated glioma. The researchers want to understand what happens as a result of different treatments for NF1-associated glioma and how these treatments and the disease itself affect people's lives over a period of time. Information collected during this study could affect how doctors diagnose, test, and treat NF1-associated glioma, and the study could help future patients with this type of cancer.
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- RECRUITING
- Sex
- All
- Target Recruitment
- 50
- 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.
- Unwillingness to sign informed consent.
- No proficiency in English or Spanish as determined by the Investigator.
Study & Design
- Study Type
- OBSERVATIONAL
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method Registry of patients with Neurofibromatosis Type 1 (NF1) associated glioma 5 years The overarching goal of the registry is to collect baseline and follow-up 1) clinical and 2) imaging data to have a centralized and living repository of information about the adult glioma NF1 patient population.
- Secondary Outcome Measures
Name Time Method
Trial Locations
- Locations (7)
Memorial Sloan Kettering Basking Ridge (All Protocol Activities)
🇺🇸Basking Ridge, New Jersey, United States
Memorial Sloan Kettering Suffolk - Commack (All Protocol Activities)
🇺🇸Commack, New York, United States
Memorial Sloan Kettering Monmouth (All protocol activities)
🇺🇸Middletown, New Jersey, United States
Memorial Sloan Kettering Bergen (All Protocol Activities)
🇺🇸Montvale, New Jersey, United States
Memorial Sloan Kettering Cancer Center (All Protocol Activities)
🇺🇸New York, New York, United States
Memorial Sloan Kettering West Harrison (All Protocol Activities)
🇺🇸West Harrison, New York, United States
Memorial Sloan Kettering Nassau (All Protocol Activities)
🇺🇸Rockville Centre, New York, United States