International Rare Brain Tumor Registry
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- This is an observational study: the protocol does not assign a study treatment.
- Who it may be relevant to
- Registry conditions: Astroblastoma, BCOR ITD Sarcoma, CNS Sarcoma, Unclassified Tumor, Malignant. Basic parameters: up to 45 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- United States, Brazil, Colombia, Israel
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
Unsure about the terms? Read our patient guide →
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.
Detailed description
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.
Primary outcome measures
- Event-free Survival [Time frame: 10 years]
Secondary outcome measures (2)
- Molecular characterization [Time frame: 10 years]
- Radiological characterization [Time frame: 10 years]
Eligibility criteria
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.
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: No
Study design
- Observational model
- Cohort
Study locations
United States · 6 centers
- Children's Hospital Los Angeles — Los Angeles
- University of California San Francisco — San Francisco
- Children's National Hospital — Washington D.C.
- Ann & Robert H. Lurie Children's Hospital of Chicago — Chicago
- Akron Children's Hospital — Akron
- Cincinnati Children's Hospital Medical Center — Cincinnati
Israel · 4 centers
- Rambam Health Care Campus — Haifa
- Schneider Children's Medical Center- CLALIT Health Services — Petah Tikva
- Dana-Dwek Children's Hospital- Tel Aviv Medical Center — Tel Aviv
- The Sheba Medical Center — Tel Litwinsky
Colombia · 2 centers
- HOMI - Fundación Hospital de la Misericordia — Bogotá
- Clinica Del Country — Bogotá
Brazil · 1 center
- TUCCA - Santa Marcelina — São Paulo
Identifiers
NCT: NCT05697874 · STUDY00000324