Registry collects samples and data from young people with rare brain tumors
Collects tissue samples and health records from young people with rare brain tumors.
Plain-language title generated from the registry record
Registry title: International Rare Brain Tumor Registry
Key facts
- Where
- Akron, Chicago, Cincinnati, Los Angeles, San Francisco, and Washington D.C., United StatesSee the 6 sites
Where in United States
- Akron Children's HospitalAkron, United StatesTaking people
- Ann & Robert H. Lurie Children's Hospital of ChicagoChicago, United StatesTaking people
- Cincinnati Children's Hospital Medical CenterCincinnati, United StatesTaking people
- Children's Hospital Los AngelesLos Angeles, United StatesTaking people
- University of California San FranciscoSan Francisco, United StatesTaking people
- Children's National HospitalWashington D.C., United StatesTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- Children's National Research Institute
- Trial code
- NCT05697874
- Record updated
- 7 August 2026
- Original description
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.Read full original descriptionShow less
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.
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 is older than 46 years of age at diagnosis; The patient has an extra-CNS primary tumor; The patient or family is not willing to participate or does not sign informed consent.