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

This research is being done to find out more information about a brain tumor called Embryonal Tumor with Multilayer Rosettes (ETMR) by collecting medical information from children who have this disease. The purpose of this research study is to create and maintain a research database for patients with ETMR. The database will include information about occurrence rates, patient information, tumor tissue information, and response to treatment. This will help advance our understanding of this rare disease. In addition, this study will include obtaining survival data and evaluating therapeutic response to expert consensus therapy, and procuring patient tumor tissue.

NCT Number	NCT04794686
Lead Sponsor	Hackensack Meridian Health
Conditions	Embryonal Tumor With Multilayered Rosettes
Enrollment	100 participants
Start Date	2020-07-12
Primary Completion	2030-07-12 (estimated)
Study Completion	2030-07-12 (estimated)
Updated on ClinicalTrials.gov	2026-06-02