International Rare Brain Tumor Registry

Recruiting now

Conditions studied: Astroblastoma, BCOR ITD Sarcoma, CNS Sarcoma, Unclassified Tumor, Malignant

In brief

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.

Key facts

Study ID

NCT05697874

Run by

Children's National Research Institute

People needed

5800

Starts

2023-01-01

Expected to finish

2033-12-01

Last updated by the study team

2026-08-07

Who can join

Age: any, up to 45. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• 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.

You may not qualify if…

• 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.

Where it is running

• Children's Hospital Los Angeles — Los Angeles, California, United States (enrolling)
• University of California San Francisco — San Francisco, California, United States (enrolling)
• Children's National Hospital — Washington D.C., District of Columbia, United States (enrolling)
• Ann & Robert H. Lurie Children's Hospital of Chicago — Chicago, Illinois, United States (enrolling)
• Akron Children's Hospital — Akron, Ohio, United States (enrolling)
• Cincinnati Children's Hospital Medical Center — Cincinnati, Ohio, United States (enrolling)
• TUCCA - Santa Marcelina — São Paulo, São Paulo, Brazil (enrolling)
• HOMI - Fundación Hospital de la Misericordia — Bogotá, Bogota D.C., Colombia (enrolling)
• Clinica Del Country — Bogotá, Colombia (enrolling)
• Rambam Health Care Campus — Haifa, Israel (enrolling)
• Schneider Children's Medical Center- CLALIT Health Services — Petah Tikva, Israel (enrolling)
• Dana-Dwek Children's Hospital- Tel Aviv Medical Center — Tel Aviv, Israel (enrolling)
• The Sheba Medical Center — Tel Litwinsky, Israel (enrolling)

Full record on ClinicalTrials.gov

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