Glioma Developmental and HyperActive Ras Tumor (DHART) Board

Recruiting

• 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

Study Timeline

• Study Start: 2022-07-29
• Study First Submitted: 2022-08-01
• Study First Submitted QC: 2022-08-03
• Study First Posted: 2022-08-05
• Status Verified: 2025-06
• Last Update Submitted: 2025-06-25
• Last Update Posted: 2025-06-29
• Primary Completion: 2026-07-31
• Study Completion: 2026-07-31

Recruitment & Eligibility

• Status: RECRUITING
• Sex: All
• Target Recruitment: 50

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.

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.

Trial Locations

Locations (7)

Memorial Sloan Kettering Basking Ridge (All Protocol Activities); 🇺🇸 Basking Ridge, New Jersey, 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 Suffolk - Commack (All Protocol Activities); 🇺🇸 Commack, New York, United States

Memorial Sloan Kettering West Harrison (All Protocol Activities); 🇺🇸 Harrison, New York, United States

Memorial Sloan Kettering Cancer Center (All Protocol Activities); 🇺🇸 New York, New York, United States

Memorial Sloan Kettering Nassau (All Protocol Activities); 🇺🇸 Rockville Centre, New York, United States