ACSQHC-ARCR-260

The Australian Brain Cancer Registry (ABCR) was launched in 2025 by Brain Cancer Australia (BCA) as a national, population wide, clinical quality registry reporting on specific brain cancer Clinical Quality Indicators. The ABCR aims to promote timely access to optimal care, identify management practices associated with longest survival and in turn improve outcomes for patients. Automated, electronic data collection is used to collect data across Australia, using data linkage to gather information from diverse systems.

The registry will generate regular reports on treatment quality and outcomes. These will include publicly accessible, aggregated clinical data, and confidential, risk-adjusted data to contributors. The reports will provide valuable insights to healthcare providers, policymakers, and the public. The ABCR will support research by providing high-quality data to help advance medical knowledge and improve treatment practices.

The registry is managed by Cancer Alliance Queensland (CAQ). The operational model involves collaboration between BCA, CAQ, health departments, and state health data custodians. Registry operation and oversight is ensured by a Management Committee, Operations Committee, Data Management Committee, Research Committee, and Consumer Advisory Committee. These committees oversee the registry’s operations, data management, and research activities. The ABCR adheres to strict ethical guidelines and privacy laws to protect patient data. Ethics and governance approvals are sought for each jurisdiction, and data security is ensured by CAQ through robust data handling, storage, and oversight processes.