International Rare Brain Tumor Registry

Children's National Research Institute5,800 enrolled

Overview

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.

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.

Study Type

OBSERVATIONAL

Enrollment

5,800

Conditions

Astroblastoma BCOR ITD Sarcoma CNS Sarcoma Unclassified Tumor, Malignant

Eligibility

Sex: ALLMax age: 45 Years

Medical Language ↔ Plain English

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.

Locations (4)

Nathan Robison

Los Angeles, California, United States

RECRUITING

Marie Jaeger-Krause

San Francisco, California, United States

RECRUITING

Children's National Hospital

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

RECRUITING

Outcomes

Primary Outcomes

Event-free Survival

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.

Time frame: 10 years

Secondary Outcomes

Molecular characterization

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.

Time frame: 10 years

Radiological characterization

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

Time frame: 10 years

Central Contacts

Adriana Fonseca, MD

CONTACT

202-476-8399 afonsecash@childrensnational.org

Skyler Speciale, RN

CONTACT

202-476-4384 sspeciale@childrensnational.org

Data from ClinicalTrials.gov

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