International Registry for Rare Pediatric and Young Adult Embryonal Tumors of the Central Nervous System

What this Trial Is About

Central nervous system CNS tumors are the most common solid cancers in children, with embryonal tumors making up about 20-25% of these cases. This international registry focuses on rare embryonal tumors of the CNS, such as ETMR, FOXR2-activated CNS neuroblastoma, cribriform neuroepithelial tumor, CNS tumor with BCOR internal tandem duplication, and others. These tumors are very rare, difficult to diagnose, and lack standard treatment guidelines due to limited data. The registry aims to collect detailed information to better understand these tumors characteristics, treatments, and outcomes. The study collects data retrospectively and prospectively from children and young adults diagnosed with these rare CNS embryonal tumors since January 2010. The collected information includes patient details, tumor characteristics, diagnosis and treatment methods, complications, late effects, outcomes, and follow-up data. This large multicenter effort is supported by the Immune Oncology Research Institute and includes patients up to 25 years old. Participants data will be gathered via questionnaires completed by participating centers and national groups. The study measures key outcomes such as 3-year and 5-year overall survival, complete remission rates, and event-free survival at 3 and 5 years. Quality control and data management are overseen by the Immune Oncology Research Institute. The registry will help identify prognostic factors, treatment gaps, and inform future diagnostic and treatment recommendations.

Rare Embryonal Tumors of the Central Nervous System: International Registry