International Rare Brain Tumor Registry

NCT ID: NCT05697874

Last Updated: 2025-09-08

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Total Enrollment

5800 participants

Study Classification

OBSERVATIONAL

Study Start Date

2023-01-01

Study Completion Date

2033-12-31

Brief Summary

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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.

Detailed Description

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The International Rare Brain Tumor Registry (IRBTR) is a prospective observational study that will collect tumor samples and matched clinical and radiological data to better understand the outcomes of patients with rare brain tumors in particular: CNS sarcoma, BCOR, MN-1 altered tumors, PLAG/L1, and other rare or unclassified rare brain tumors.

Data collected include demographics, disease characteristics, treatment information, radiological imaging, and biospecimen collection if available ( tumor tissues Patients will be followed longitudinally to obtain outcome data. Data collection will continue for approximately 10 years.

Conditions

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Astroblastoma BCOR ITD Sarcoma CNS Sarcoma Unclassified Tumor, Malignant

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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CNS Sarcoma

Patients diagnosed with Central nervous system (CNS) sarcomas

No interventions assigned to this group

BCOR-altered

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

No interventions assigned to this group

Astroblastoma/MN-1- altered

Patients diagnosed with Astroblastomas/MN-1 alterations

No interventions assigned to this group

Unclassifiable tumors

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

No interventions assigned to this group

Other Rare Brain tumors

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

No interventions assigned to this group

Eligibility Criteria

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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.
Maximum Eligible Age

45 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Children's National Research Institute

OTHER

Sponsor Role lead

Responsible Party

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Adriana Fonseca

Oncologist

Responsibility Role PRINCIPAL_INVESTIGATOR

Principal Investigators

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Adriana Fonseca, MD

Role: PRINCIPAL_INVESTIGATOR

[email protected]

Locations

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Nathan Robison

Los Angeles, California, United States

Site Status RECRUITING

Marie Jaeger-Krause

San Francisco, California, United States

Site Status RECRUITING

Children's National Hospital

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

Site Status RECRUITING

Scott Raskin

Cincinnati, Ohio, United States

Site Status RECRUITING

Countries

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United States

Central Contacts

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Adriana Fonseca, MD

Role: CONTACT

202-476-8399

Skyler Speciale, RN

Role: CONTACT

202-476-4384

Facility Contacts

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Nathan Robison, MD

Role: primary

323-361-4624

Eliana Romero

Role: backup

323-361-8957

Marie Jaeger-Krause, MD

Role: primary

4154763831

Cammy Britts

Role: backup

(650)-796-8115

Adriana Fonseca, MD

Role: primary

202-476-3899

Skyler Speciale

Role: backup

202-476-4384

Scott Raskin, MD

Role: primary

(513) 636-4200

Diarra Diop

Role: backup

513-517-2059

Other Identifiers

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STUDY00000324

Identifier Type: -

Identifier Source: org_study_id

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