International Rare Brain Tumor Registry

RecruitingObservational study

Who can join

Up to age 45 · All sexes

Full eligibility criteria

Inclusion Criteria:

* Patients with a known or suspected CNS Sarcoma.
* Patients with a known or suspected BCOR-altered brain tumor
* Patients with a known or suspected Astroblastoma/NM-1 altered brain tumor
* Patients with known or suspected histologically ambiguous/unclassifiable brain tumor
* Patients with a known or suspected rare brain tumor.
* Signed informed consent by patient/ parent or guardian (assent where applicable) to participate in the study.

Exclusion Criteria:

* The patient has an extra-CNS primary tumor.
* The patient is older than 46 years of age at diagnosis.
* The patient or family is not willing to participate or does not sign informed consent.

About the study

The objective of the International Rare Brain Tumor Registry (IRBTR) is to better understand rare brain tumors through the collection of biospecimens and matched clinical data of children, adolescents, and young adult patients diagnosed with rare brain tumors.

Sponsor: Children's National Research Institute · Participants: 5,800 · Started: Jan 1, 2023

Contact the study team

Adriana Fonseca, MD · Phone: 202-476-8399
Hope Lovell · Phone: 202-476-3898

Official record on ClinicalTrials.gov — NCT05697874

Locations in the U.S.

California	Children's Hospital Los Angeles, Los Angeles University of California San Francisco, San Francisco
District of Columbia	Children's National Hospital, Washington D.C.
Illinois	Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago
Ohio	Akron Children's Hospital, Akron Cincinnati Children's Hospital Medical Center, Cincinnati

Conditions

From ClinicalTrials.gov, data retrieved Sep 30, 2026. Each study sets its own eligibility; the study team decides who can join.