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NCT04794686Recruiting

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

Source: ClinicalTrials.gov · Last updated 2 Jun 2026

Brief summary (registry, in English)

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.

Status (registry)
Recruiting
Study type
Observational
Enrollment
100 (estimated)
First submitted
9 Mar 2021
Start date
12 Jul 2020
Primary completion date
12 Jul 2030
Lead sponsor
Hackensack Meridian Health
NCT number
NCT04794686

What you commit to

  • Study type: Observational
  • Planned participants: 100
  • From 12 Jul 2020 to the primary completion date, 12 Jul 2030
  • 1 site in 1 country
  • Visits and tests: ask the trial team, the registry does not list them

Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.

Who cannot take part

Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.

Who the study is looking for

  • 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

Sex: All

Full criteria on ClinicalTrials.gov

Sites (1)

Sites in registry order. Pick your city on the disease page to sort them by distance.

SiteCityCountrySite status
Hackensack University Medical Center
Coordinator of this site? Confirm its status
HackensackUnited StatesRecruiting

This page is information, not medical advice. Discuss any trial with your doctor.