Back to search results

International Rare Brain Tumor Registry

This study, called the International Rare Brain Tumor Registry (IRBTR), aims to learn more about rare brain tumors. Researchers will collect tumor samples and medical information from children, teenagers, and young adults who have been diagnosed with certain rare brain tumors, including Astroblastoma, BCOR ITD Sarcoma, CNS Sarcoma, or other unclassified malignant brain tumors. The study is not testing a new treatment, but rather observing how these conditions progress over time. The main goal is to understand how long patients live without their disease getting worse (Event-free Survival) over a 10-year period. You might be able to join if you are between birth and 45 years old and have a known or suspected rare brain tumor, such as those mentioned above.

Study design
This is an observational study that plans to include 5800 participants. It is not testing a specific intervention.
What's involved
The study involves collecting tumor samples and matched clinical and radiological data. You will be followed over time to gather information about your health outcomes.
Compensation
Not stated in the trial record.
Follow-up
Participants will be followed for approximately 10 years to collect outcome data.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT05697874

International Rare Brain Tumor Registry

Recruiting
Not specifiedUp to 45Observational
Children's National Research Institute
~5,800 participants
Updated 2026-08-07 on ClinicalTrials.gov

At a glance

Recruiting sites
13 of 13 listed sites are recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Event-free Survival
Measured over 10 years

Conditions

Astroblastoma
BCOR ITD Sarcoma
CNS Sarcoma
Unclassified Tumor, Malignant

Explore related trials

Astroblastoma, MN1-AlteredBrain NeoplasmCentral Nervous System SarcomaBCOR GeneMN1 Gene

Where it's being run

13 sites across 8 states
Israel4
California2
Ohio2
District of Columbia1
Illinois1
São Paulo1
Bogota D.C.1
Colombia1

Study leadership

Who to contact

Adriana Fonseca, MD
[email protected]
202-476-8399
Email the study team

Opens a ready-to-send draft in your own email app — review before sending.

Do you actually qualify for this trial?

Add a private profile and we'll compare every criterion below against your situation — and tell you which ones are met, uncertain, or excluding.

Check eligibility for this trial ~2 min · HIPAA-protected · delete anytime
Eligibility criteria

Inclusion

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

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.

What this trial measures

  • Event-free Survival10 years

    The primary outcome measure will be time from diagnosis to an event, defined as the occurrence of progression or recurrence of the disease, occurrence of a second malignant neoplasm, or death from any cause. Each cohort will be analyzed separately.