RECRUITING

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

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

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.

Official Title

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

Quick Facts

Study Start:2020-07-12
Study Completion:2030-07-12
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT04794686

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.

Ages Eligible for Study:Not specified
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:Not specified
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. 1. Patients of any age
  2. 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. 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. 4. Patients may be enrolled at point following diagnosis
  1. Pregnancy or breastfeeding
  2. Severe psychiatric disorders
  3. Active substance abuse
  4. Unstable medical conditions
  5. Inability to comply with study requirements

Contacts and Locations

Study Contact

Derek Hanson, MD
CONTACT
551-996-8437
Derek.Hanson@HMHN.org
Sherri Mayans, MSN
CONTACT
551-996-2283
Sherri.Mayans@HMHN.org

Principal Investigator

Derek Hanson, MD
PRINCIPAL_INVESTIGATOR
Hackensack Meridian Health

Study Locations (Sites)

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

Collaborators and Investigators

Sponsor: Hackensack Meridian Health

  • Derek Hanson, MD, PRINCIPAL_INVESTIGATOR, Hackensack Meridian Health

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2020-07-12
Study Completion Date2030-07-12

Study Record Updates

Study Start Date2020-07-12
Study Completion Date2030-07-12

Terms related to this study

Keywords Provided by Researchers

  • Embryonal
  • Multilayer Rosettes
  • CNS tumor

Additional Relevant MeSH Terms

  • Embryonal Tumor With Multilayered Rosettes