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

Who can join

All ages · All sexes

Inclusion Criteria:

1. Patients of any age
2. Patients must have either a histologically confirmed primary intracranial CNS Embryonal Tumor with Multilayer Rosettes (as agreed upon by central review or local pathologist OR
3. Patients must have tumor tissue that possesses C19MC amplification . Central Review is not required (but is strongly recommended) if the patient's tumor does not demonstrate C19MC amplification.
4. Patients may be enrolled at point following diagnosis

About the study

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.

Sponsor: Hackensack Meridian Health · Participants: 100 · Started: Jul 12, 2020

Contact the study team

• Derek Hanson, MD · Phone: 551-996-8437
• Kellie Daniel, BA · Phone: 551-996-3654

Official record on ClinicalTrials.gov — NCT04794686

Locations in the U.S.

Conditions

• Primitive Neuroectodermal Tumors
• Brain and Spinal Cord Tumors

From ClinicalTrials.gov, data retrieved Sep 30, 2026. Each study sets its own eligibility; the study team decides who can join.