International Rare Brain Tumor Registry

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.

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Key information

Conditions

Astroblastoma BCOR ITD Sarcoma CNS Sarcoma Disease Attributes Neoplasms Neoplasms by Histologic Type Neoplasms, Germ Cell and Embryonal Neoplasms, Glandular and Epithelial Neoplasms, Nerve Tissue Neoplasms, Neuroepithelial Neuroectodermal Tumors Pathologic Processes Pathological Conditions, Signs and Symptoms Rare Diseases Unclassified Tumor, Malignant

Age range

Up to 45 year

Sex eligibility

All sexes

Study type

Observational

Primary location

Rambam Health Care Campus, Haifa, Israel

About this study

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.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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.

Treatment and study plan

Primary outcomes

Event-free Survival

Time frame: 10 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.

Secondary outcomes

Molecular characterization

Time frame: 10 years

To determine molecular characteristics of each cohort using somatic and germline SNV calling, methylation profiling, fusion calling and gene expression profiling. Molecular findings will be correlated with clinical characteristics to identify risk factors and subgroup-specific therapeutic susceptibilities.
Radiological characterization

Time frame: 10 years

To analyze conventional and advanced imaging findings (including diffusion weighted imaging) of each cohort and correlate them with clinical, histopathology and molecular data (radiogenomics).

Study contacts

Contact information is provided by the study sponsor or research team.

Adriana Fonseca, MD

CONTACT

[email protected]

202-476-8399

Hope Lovell

CONTACT

[email protected]

202-476-3898

Sponsors and collaborators

Lead sponsor

Children's National Research Institute

Other

Registry information

Acronym: IRBTR

Important dates

Study start: 2023
Primary completion: 2033
Study completion: 2033
First posted: Jan 26, 2023
Registry last updated: Mar 31, 2026

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

Published trials that share one or more normalized conditions with this study.

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