International Registry and Research Platform for Children with Embryonal Tumor with Multilayer Rosettes ETMR

What this Trial Is About

Researchers are collecting detailed medical information about a rare brain tumor called Embryonal Tumor with Multilayer Rosettes ETMR in children. The study aims to build and maintain a research database that includes data on how often the tumor occurs, patient details, tumor tissue characteristics, and responses to treatment. This will help improve understanding of ETMR and support future research. All patients with ETMR can join the registry regardless of their disease stage or treatment plan. The study collects epidemiologic, clinical, and molecular data after enrollment and follows patients over time to monitor outcomes. Although not required, patients are encouraged to receive a consensus therapy based on expert recommendations, which helps researchers evaluate treatment effects uniformly. Participants provide information through medical records and tumor tissue samples. The research team tracks survival and treatment responses over a 10-year period to assess how well the recommended therapy works. This observational study does not involve investigational treatments but collects valuable data to guide future care for children with ETMR.

ETMR One: An International Registry and Research Platform for Children With Embryonal Tumor With Multilayer Rosettes