Closing the data gap in brain cancer
One of the biggest barriers in brain cancer research has been the lack of high-quality, national data to understand how patients are diagnosed and treated – and how those choices impact survival.
The Australian Brain Cancer Registry (ABCR) is designed to change that. It is the first national clinical quality registry for brain cancer in Australia – and the first in the world to bring together population-wide diagnosis, treatment, and outcomes data for this disease.
The ABCR regularly reports on treatment quality and variation in practice and outcomes across Australia.
VIEW THE ABCR CLINICAL QUALITY INDICATORS AND STATISTICAL REPORT.
Why the registry matters
Until now, there has been no consistent way to track variations in brain cancer care across Australia. We know that neurosurgery, radiotherapy, and oncology treatment can vary depending on where a patient lives – but the impact of those differences on survival has remained hidden.
The ABCR will close this gap by:
- Establishing an automated data collection system, enabling adherence to best practice standards of treatment and care nationwide.
- Measuring performance against agreed Clinical Quality Indicators, developed by leading experts and published by BCA in 2021
- Identifying and addressing low-value care, ensuring more Australian brain cancer patients receive treatment that maximises survival and quality of life.
- Providing regular public reports and confidential feedback to hospitals and clinicians.
"The Australian Brain Cancer Registry is the first of its kind globally, capturing population-wide diagnosis, treatment and outcome data for brain cancer patients. This critical research infrastructure will reduce unwarranted variation in care, monitor new treatments, and be used to run cost-effective registry trials."
Professor Lindy Jeffree, Chair, Brain Cancer Australia National Consortium
How the registry works
Governance: Multiple committees oversee operations, data management, research, and consumer involvement.
Data security: All information is de-identified, ethically approved, and stored securely in line with national privacy laws.
Reporting: Aggregated data is shared publicly, while participating hospitals and clinicians receive confidential, risk-adjusted insights to improve care.
The ABCR has been made possible thanks to funding from Australian Government’s Medical Research Future Fund (MRFF) Australian Brain Cancer Mission, Ramsay Hospital Research Foundation, and Brain Cancer Australia Charity.
Click here for an overview of the ABCR or download the full Australian Brain Cancer Registry Charter.
If you would like to learn more or discuss how to get involved, please contact us at info@braincanceraustralia.org.au
