NCT05697874

International Rare Brain Tumor Registry

• Status: Recruiting
• Phase: —
• Study type: Observational
• Enrollment: 5,800 (estimated)
• Sponsor: Children's National Research Institute · Academic / Other
• Sex: All
• Age: 45 Years
• Healthy volunteers: Not accepted

Summary

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.

Detailed description

The International Rare Brain Tumor Registry (IRBTR) is a prospective observational study that will collect tumor samples and matched clinical and radiological data to better understand the outcomes of patients with rare brain tumors in particular: CNS sarcoma, BCOR, MN-1 altered tumors, PLAG/L1, and other rare or unclassified rare brain tumors. Data collected include demographics, disease characteristics, treatment information, radiological imaging, and biospecimen collection if available ( tumor tissues Patients will be followed longitudinally to obtain outcome data. Data collection will continue for approximately 10 years.

Conditions

• Astroblastoma
• BCOR ITD Sarcoma
• CNS Sarcoma
• Unclassified Tumor, Malignant

Timeline

• Start date: 2023-01-01
• Primary completion: 2033-12-01
• Completion: 2033-12-01
• First posted: 2023-01-26
• Last updated: 2026-03-31

Locations

10 sites across 2 countries: United States, Israel