Actively Recruiting

All Genders
ID04794686

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

Led by Hackensack Meridian Health · Updated on 2026-06-02

100

Participants Needed

1

Research Sites

N/A

Total Duration

On this page

AI-Summary

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.

CONDITIONS

Brief Title

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

Who Can Participate

All Genders

Eligibility Criteria

Eligible

You may qualify if you...

  • Patients of any age
  • Histologically confirmed primary intracranial CNS Embryonal Tumor with Multilayer Rosettes confirmed by central review or local pathologist
  • Tumor tissue possessing C19MC amplification
  • Enrollment possible at any point following diagnosis
Not Eligible

You will not qualify if you...

History of severe allergic reactions to study medication Currently pregnant or breastfeeding Recent participation in another clinical trial within the last 30 days Presence of uncontrolled medical conditions that could affect safety

AI-Screening

AI-Powered Screening

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Your Study Journey

Screening

Duration - 2 to 4 weeks

Participants are screened for eligibility to participate in the trial.

1 visit (in-person)

Long-term Monitoring

Duration - Up to 10 years

Participants are followed longitudinally to obtain clinical outcome data over time.

Visits scheduled periodically to collect clinical outcome data

Trial Site Locations

Total: 1 location

1

Hackensack University Medical Center

Hackensack, New Jersey, United States, 07601

Actively Recruiting

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Research Team

D

Derek Hanson, MD

K

Kellie Daniel, BA

How is the study designed?

Study Type

OBSERVATIONAL

Masking

N/A

Allocation

N/A

Model

N/A

Primary Purpose

N/A

Number of Arms

0

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Published Research Related To This Trial

Markers of survival and metastatic potential in childhood CNS primitive neuro-ectodermal brain tumours: an integrative genomic analysis.

Daniel Picard, Suzanne Miller, Cynthia E Hawkins...

https://pubmed.ncbi.nlm.nih.gov/22691720

Embryonal tumor with abundant neuropil and true rosettes (ETANTR), ependymoblastoma, and medulloepithelioma share molecular similarity and comprise a single clinicopathological entity.

Andrey Korshunov, Dominik Sturm, Marina Ryzhova...

https://pubmed.ncbi.nlm.nih.gov/24337497