Glioma Developmental and HyperActive Ras Tumor (DHART) Board

Status

Recruiting

Phases

Unknown

Study type

Observational

Source

ClinicalTrials.gov

Registry ID

NCT05489783

Enrollment

Registered

2022-08-05

Start date

2022-07-29

Completion date

2027-07-31

Last updated

2026-08-31

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Glioma

Keywords

NF1-associated glioma, Neurofibromatosis, Registry, 22-199

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.

Interventions

None listed

Study design

Observational model

COHORT

Time perspective

PROSPECTIVE

Eligibility

Sex/Gender

ALL

Age

18 Years to No maximum

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.

Design outcomes

Primary

Measure	Time frame	Description
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.

Countries

United States

Contacts

CONTACTAnna Piotrowski, MD

piotrowa@mskcc.org212-610-0483

CONTACTIngo Mellinghoff, MD

646-888-3036

PRINCIPAL_INVESTIGATORAnna Piotrowski

Memorial Sloan Kettering Cancer Center

Outcome results