Glioma Developmental and HyperActive Ras Tumor (DHART) Board
Who can join
Ages 18 and older · All sexes
Full 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.
About the study
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.
Sponsor: Memorial Sloan Kettering Cancer Center · Participants: 50 · Started: Jul 29, 2022
Contact the study team
- Anna Piotrowski, MD · Phone: 212-610-0483
- Ingo Mellinghoff, MD · Phone: 646-888-3036
Official record on ClinicalTrials.gov — NCT05489783
Locations in the U.S.
Conditions
From ClinicalTrials.gov, data retrieved Sep 30, 2026. Each study sets its own eligibility; the study team decides who can join.