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

Recruiting now

Conditions studied: Embryonal Tumor With Multilayered Rosettes

In brief

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.

Key facts

Study ID

NCT04794686

Run by

Hackensack Meridian Health

People needed

100

Starts

2020-07-12

Expected to finish

2030-07-12

Last updated by the study team

2026-06-02

Who can join

Age: any. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• Patients of any age
• 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
• 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.
• Patients may be enrolled at point following diagnosis

Where it is running

• Hackensack University Medical Center — Hackensack, New Jersey, United States (enrolling)

Full record on ClinicalTrials.gov

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