Registry for children with a rare brain tumor called ETMR

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This research aims to gather comprehensive medical information about children diagnosed with Embryonal Tumor with Multilayer Rosettes (ETMR) to create a detailed registry. The registry will collect data on occurrence rates, patient demographics, tumor characteristics, and treatment responses. Patients will be followed over time to assess clinical outcomes and survival data. The study encourages the use of a consensus therapy based on existing literature and clinical experience to standardize treatment approaches for better evaluation.

Why it matters

Who can join: the full rules

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

Where it's running

• Hackensack University Medical Center
  Hackensack, New Jersey, United States Recruiting

Study contacts

• Principal investigator: Derek Hanson, MD — Hackensack Meridian Health
• Study coordinator: Derek Hanson, MD
• Email: Derek.Hanson@HMHN.org
• Phone: 551-996-8437

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

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• Treatment for children with Embryonal Tumor With Multilayered Rosettes

  This study is testing a combination of chemotherapy and radiation to see if it helps children with a specific type of brain tumor called ETMR live longer and stay healthy after treatment.

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  This trial tests whether adding the oral drug AMXT 1501 to oral DFMO can help children and young adults (diagnosed by age 21) with relapsed or refractory neuroblastoma, ETMR, ATRT, Ewing sarcoma, osteosarcoma, or newly diagnosed DIPG.

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• Immunotherapy using personalized T cells for pediatric brain tumors

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.