Recruiting

Embryonal Tumor

Sponsor:

Hackensack Meridian Health

Code:

NCT04794686

Conditions

Embryonal Tumor With Multilayered Rosettes

Eligibility Criteria

Sex: All

Age: 0+

Healthy Volunteers: Not accepted

Study Details

Brief summary:

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 ID

NCT04794686

Start date

Jul 12, 2020

Status verified date

May, 2026

Completion date

Jul 12, 2030

Anticipated

Primary completion date

Jul 12, 2030

Anticipated

Eligibility Criteria

Eligibility Criteria

Sex: All

Age: 0+

Healthy Volunteers: Not accepted

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

Study Design

Enrollment

100 participants

Anticipated

Interventions and Outcome Measures

Primary outcome measure

  • ETMR One Registry [ Time Frame: 10 years ]
  • Efficacy of consensus therapy on median event-free survival [ Time Frame: 10 years ]

Central Contacts and Locations

Central contacts

Derek Hanson, MD

551-996-8437Derek.Hanson@HMHN.org

Kellie Daniel, BA

551-996-3654Kellie.daniel@HMHN.org

Locations

Hackensack University Medical Center

Recruiting

Hackensack, New Jersey, United States, 07601

Contacts

Elana Smilow Smilow, MSN

551-996-5673elana.smilow@HMHN.org

Kellie Daniel, BA

551-996-3654Kellie.Daniel@HMHN.org

More Information

Sponsor

Hackensack Meridian Health

Last update posted

Jun 2, 2026

Last verified

May, 2026

Keywords

  • Embryonal
  • Multilayer Rosettes
  • CNS tumor

Trial information was received from ClinicalTrials.gov and was last updated on 2026-09-10. This information was provided to ClinicalTrials.gov by Hackensack Meridian Health on 2026-06-02.