Glioma Developmental and HyperActive Ras Tumor (DHART) Board

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

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.

Conditions2

Locations7 sites

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