International Rare Brain Tumor Registry

Launched by CHILDREN'S NATIONAL RESEARCH INSTITUTE · Jan 23, 2023

Keywords

ClinConnect Summary

The International Rare Brain Tumor Registry (IRBTR) is a clinical trial aimed at understanding rare brain tumors, specifically in children, adolescents, and young adults. The study focuses on collecting samples from patients and their medical information to learn more about conditions like astroblastoma, BCOR ITD sarcoma, CNS sarcoma, and other unclassified tumors. By gathering this information, researchers hope to improve diagnosis and treatment for these rare cancers.

To participate in this study, patients must be diagnosed with one of the mentioned brain tumors or have a strong suspicion of having one. Eligible participants can be as young as a newborn up to 46 years old, and both boys and girls can join. Families willing to participate will need to provide signed consent, and in some cases, assent from the patient. Participants can expect to provide biospecimens, like tissue samples, and share their health information, which will help researchers better understand these rare tumors and potentially lead to advancements in treatment options.

Gender

ALL

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.