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

Description

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.

Conditions

Embryonal Tumor With Multilayered Rosettes

Study Overview

Study Details

Study overview

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.

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

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

Condition
Embryonal Tumor With Multilayered Rosettes
Intervention / Treatment

-

Contacts and Locations

Hackensack

Hackensack University Medical Center, Hackensack, New Jersey, United States, 07601

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

For general information about clinical research, read Learn About Studies.

Eligibility 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

Ages Eligible for Study

to

Sexes Eligible for Study

ALL

Accepts Healthy Volunteers

No

Collaborators and Investigators

Hackensack Meridian Health,

Derek Hanson, MD, PRINCIPAL_INVESTIGATOR, Hackensack Meridian Health

Study Record Dates

2030-07-12