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Glioma Developmental and HyperActive Ras Tumor (DHART) Board Registry

This study is creating a registry, which is a collection of health information, for people with a type of brain tumor called NF1-associated glioma (glioma linked to Neurofibromatosis Type 1). Researchers will gather your medical records, scan results, and survey responses over five years. The goal is to better understand how NF1-associated glioma is diagnosed and treated, and how these treatments and the disease affect your quality of life. This study is for adults aged 18 and older who have a clinical diagnosis of NF1 and a confirmed glioma. There are no specific interventions or drugs being tested in this observational study.

Study design
This is an observational study aiming to enroll 50 participants. It is not testing a new treatment but rather collecting information to learn more about NF1-associated glioma.
What's involved
You would need to agree to have your historical and future NF1-related health records sent to the registry for review. You will also complete surveys.
Compensation
Not stated in the trial record.
Follow-up
Participants will be part of the registry for five years to track their health information.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT05489783

Glioma Developmental and HyperActive Ras Tumor (DHART) Board

Recruiting
Not specifiedAges 18+Observational
Memorial Sloan Kettering Cancer Center
~50 participants
Updated 2026-06-29 on ClinicalTrials.gov

At a glance

Recruiting sites
7 of 7 listed sites are recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Registry of patients with Neurofibromatosis Type 1 (NF1) associated glioma
Measured over 5 years

Conditions

Glioma

Explore related trials

GliomaNeurofibromatosis

Where it's being run

7 sites across 2 states
New York4
New Jersey3

Study leadership

  • Anna Piotrowski · PRINCIPAL_INVESTIGATOR · Memorial Sloan Kettering Cancer Center

Who to contact

Anna Piotrowski, MD
[email protected]
212-610-0483
Email the study team

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Do you actually qualify for this trial?

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Eligibility criteria

Inclusion

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

Unwillingness to sign informed consent.
No proficiency in English or Spanish as determined by the Investigator.

What this trial measures

  • Registry of patients with Neurofibromatosis Type 1 (NF1) associated glioma5 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.