Glioma Developmental and HyperActive Ras Tumor (DHART) Board

Sponsor

Memorial Sloan Kettering Cancer Center (Other)

Overall Status

Recruiting

CT.gov ID

NCT05489783

Collaborator

(none)

Enrollment

Locations

Anticipated Duration (Months)

7.1

Patients Per Site

0.2

Patients Per Site Per Month

Study Details

Study Description

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.

Condition or Disease	Intervention/Treatment	Phase
Glioma

Study Design

Study Type:

Observational [Patient Registry]

Anticipated Enrollment :

50 participants

Observational Model:

Cohort

Time Perspective:

Prospective

Official Title:

Glioma Developmental and HyperActive Ras Tumor (DHART) Board

Actual Study Start Date :

Jul 29, 2022

Anticipated Primary Completion Date :

Jul 29, 2025

Anticipated Study Completion Date :

Jul 29, 2025

Outcome Measures

Primary Outcome Measures

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.

Eligibility Criteria

Criteria

Ages Eligible for Study:

18 Years and Older

Sexes Eligible for Study:

All

Accepts Healthy Volunteers:

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.

Contacts and Locations

Locations

	Site	City	State	Country	Postal Code
1	Memorial Sloan Kettering Basking Ridge (All Protocol Activities)	Basking Ridge	New Jersey	United States	07920
2	Memorial Sloan Kettering Monmouth (All protocol activities)	Middletown	New Jersey	United States	07748
3	Memorial Sloan Kettering Bergen (All Protocol Activities)	Montvale	New Jersey	United States	07645
4	Memorial Sloan Kettering Suffolk - Commack (All Protocol Activities)	Commack	New York	United States	11725
5	Memorial Sloan Kettering West Harrison (All Protocol Activities)	Harrison	New York	United States	10604
6	Memorial Sloan Kettering Cancer Center (All Protocol Activities)	New York	New York	United States	10065
7	Memorial Sloan Kettering Nassau (All Protocol Activities)	Rockville Centre	New York	United States	11570