Clinical trial NCT05489783: Glioma Developmental and HyperActive Ras Tumor (DHART) Board
Official title: Glioma Developmental and HyperActive Ras Tumor (DHART) Board
Study type: OBSERVATIONAL
Overall status: RECRUITING
Conditions: Glioma
Keywords: NF1-associated glioma
Neurofibromatosis
Registry
22-199
Lead sponsor: Memorial Sloan Kettering Cancer Center
Sponsor class: OTHER
First posted: 2022-08-05
Enrollment: 50
Sex: ALL
Minimum age (years): 18
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: no
Observational model: COHORT
Time perspective: PROSPECTIVE
Sampling method: NON_PROBABILITY_SAMPLE
Study population: Patients with NF1 glioma will be enrolled in this registry study.

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.


Eligibility 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.

Primary outcomes:
measure: Registry of patients with Neurofibromatosis Type 1 (NF1) associated glioma
timeFrame: 5 years
Secondary outcomes:
Other outcomes:
Locations:
city: Basking Ridge
country: United States
facility: Memorial Sloan Kettering Basking Ridge (All Protocol Activities)
state: New Jersey
city: Middletown
country: United States
facility: Memorial Sloan Kettering Monmouth (All protocol activities)
state: New Jersey
city: Montvale
country: United States
facility: Memorial Sloan Kettering Bergen (All Protocol Activities)
state: New Jersey
city: Commack
country: United States
facility: Memorial Sloan Kettering Suffolk - Commack (All Protocol Activities)
state: New York
city: New York
country: United States
facility: Memorial Sloan Kettering Cancer Center (All Protocol Activities)
state: New York
city: Rockville Centre
country: United States
facility: Memorial Sloan Kettering Nassau (All Protocol Activities)
state: New York
city: West Harrison
country: United States
facility: Memorial Sloan Kettering West Harrison (All Protocol Activities)
state: New York
Study officials:
affiliation: Memorial Sloan Kettering Cancer Center
name: Anna Piotrowski
role: PRINCIPAL_INVESTIGATOR
References: