Recruiting

Observational StudyInternational Rare Brain Tumor Registry

Sponsor:

Children's National Research Institute

Code:

NCT05697874

Conditions

Astroblastoma

BCOR ITD Sarcoma

CNS Sarcoma

Unclassified Tumor, Malignant

Eligibility Criteria

Sex: All

Age: 0 - 45

Healthy Volunteers: Not accepted

Study Details

Brief summary:

The objective of the International Rare Brain Tumor Registry (IRBTR) is to better understand rare brain tumors through the collection of biospecimens and matched clinical data of children, adolescents, and young adult patients diagnosed with rare brain tumors.

Conditions

Astroblastoma

BCOR ITD Sarcoma

CNS Sarcoma

Unclassified Tumor, Malignant

Study ID

NCT05697874

Start date

Jan 1, 2023

Status verified date

Mar, 2026

Completion date

Dec, 2033

Anticipated

Primary completion date

Dec, 2033

Anticipated

Eligibility Criteria

Sex: All

Age: 0 - 45

Healthy Volunteers: Not accepted

Inclusion Criteria:

Patients with a known or suspected CNS Sarcoma.
Patients with a known or suspected BCOR-altered brain tumor
Patients with a known or suspected Astroblastoma/NM-1 altered brain tumor
Patients with known or suspected histologically ambiguous/unclassifiable brain tumor
Patients with a known or suspected rare brain tumor.
Signed informed consent by patient/ parent or guardian (assent where applicable) to participate in the study.

Exclusion Criteria:

The patient has an extra-CNS primary tumor.
The patient is older than 46 years of age at diagnosis.
The patient or family is not willing to participate or does not sign informed consent.

Study Design

Enrollment

5800 participants

Anticipated

Interventions and Outcome Measures

Arms

CNS Sarcoma

Patients diagnosed with Central nervous system (CNS) sarcomas

BCOR-altered

Patients diagnosed with tumors characterized by alterations in the BCOR gene.

Astroblastoma/MN-1- altered

Patients diagnosed with Astroblastomas/MN-1 alterations

Unclassifiable tumors

Patients diagnosed with histologically ambiguous tumors or tumors that fail to classify with the current diagnostic methods.

Other Rare Brain tumors

Patients diagnosed with other rare brain tumors that do not meet the criteria for cohorts 1-4.

Primary outcome measure

Event-free Survival [ Time Frame: 10 years ]

Central Contacts and Locations

Central contacts

Adriana Fonseca, MD

202-476-8399 afonsecash@childrensnational.org

Hope Lovell

202-476-3898 hlovell@childrensnational.org

Locations

Children's Hospital Los Angeles

Recruiting

Los Angeles, California, United States, 90027

Contacts

Nathan Robison, MD

323-361-4624 nrobison@chla.usc.edu

Eliana Romero

323-361-8957 eromero@chla.usc.edu

Principal Investigator:

Nathan Robison, MD

University of California San Francisco

Recruiting

San Francisco, California, United States, 94158

Contacts

Marie Jaeger-Krause, MD

4154763831 marie.jaeger-krause@ucsf.edu

Cammy Britts

(650)-796-8115 Cammy.Britts@ucsf.edu

Principal Investigator:

Marie Jaeger-Krause, MD

Children's National Hospital

Recruiting

Washington D.C., District of Columbia, United States, 20010

Contacts

Adriana Fonseca, MD

202-476-3899 afonsecash@childrensnational.org

Hope Lovell

202-476-3898 hlovell@childrensnational.org

Principal Investigator:

Adriana Fonseca, MD

Ann & Robert H. Lurie Children's Hospital of Chicago

Recruiting

Chicago, Illinois, United States, 60611

Contacts

Miriam Bornhorst, MD

2024762140 mbornhorst@luriechildrens.org

Kelly Bruno

kbruno@luriechildrens.org

Principal Investigator:

Miriam Bornhorst, MD

Akron Children's Hospital

Recruiting

Akron, Ohio, United States, 44308

Contacts

Erin Wright, MD

3305438580 ewright@akronchildrens.org

Emily Blue

eblue@akronchildrens.org

Principal Investigator:

Erin Wright, MD

Cincinnati Children's Hospital Medical Center

Recruiting

Cincinnati, Ohio, United States, 45229-3026

Contacts

Scott Raskin, DO

(513) 636-4200 scott.raskin@cchmc.org

Cecilia Grizzell

Cecilia.Grizzell@cchmc.org

Principal Investigator:

Scott Raskin, DO

More Information

Sponsor

Children's National Research Institute

Last update posted

Aug 7, 2026

Last verified

Mar, 2026

Keywords

Rare Brain Tumor
Pediatric Brain Tumor Registry
Unclassifiable tumor
Pediatric Neuro-Oncology
Rare Disease

Trial information was received from ClinicalTrials.gov and was last updated on 2026-09-09. This information was provided to ClinicalTrials.gov by Children's National Research Institute on 2026-08-07.