Registry for children with a rare brain tumor called ETMR
ETMR One: An International Registry and Research Platform for Children With Embryonal Tumor With Multilayer Rosettes
Hackensack Meridian Health · NCT04794686
This study is creating a detailed registry to collect important health information about children with a rare brain tumor called ETMR to improve treatment and understand their outcomes better.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 100 (estimated) |
| Sex | All |
| Sponsor | Hackensack Meridian Health (other) |
| Locations | 1 site (Hackensack, New Jersey) |
| Trial ID | NCT04794686 on ClinicalTrials.gov |
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.
Who should consider this trial
Good fit: Ideal candidates include children of any age with a confirmed diagnosis of ETMR or those with tumor tissue showing C19MC amplification.
Not a fit: Patients without a confirmed diagnosis of ETMR or those whose tumors do not exhibit C19MC amplification may not benefit from this study.
Why it matters
Potential benefit: If successful, this registry could enhance understanding and treatment of ETMR, potentially improving outcomes for affected children.
How similar studies have performed: While this approach is focused on registry data collection, similar studies have shown success in improving understanding and treatment of rare tumors through comprehensive data gathering.
Eligibility criteria
Show full inclusion / exclusion criteria
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 this trial is running
Hackensack, New Jersey
- 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
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions: Embryonal Tumor With Multilayered Rosettes, Embryonal, Multilayer Rosettes, CNS tumor