Overview

This funding will support the establishment of an Australian Brain Cancer Registry (ABCR) to improve quality of life and survival for a cancer group that has not seen any noticeable change in outcomes in decades. With this grant, Brain Cancer Biobanking Australia (BCBA) and project partners, Cancer Alliance Queensland (CAQ) and the Australian e-Health Research Centre at CSIRO, will establish the ABCR by developing infrastructure, natural language processing and a data dictionary to enable the automated electronic collection of the data points required to report Clinical Quality Indicators.

CAQ will build on the current clinical application software suite, by developing a new application clinical quality register application known as QOOL-CQR (pronounced seeker). We predict this approach will capture clinical management information for >90% of all brain cancer patients in Australia, approximately 1600 patients per year.

CAQ will also create a Registry Trials and Patient Enrolment Portal (RTPEP) that will support patients to participate in research, including randomised trials, and collect outcome data. RTPEP will support storage of genomic data and patient consent for research use of data. This will make clinical trials more available and affordable and will enable future translational research.

A third Biobanking and Organoid Platform will be established to standardise national brain cancer biobanking, facilitate linkage of ABCR data to banked samples, and establish national protocols for brain organoid development and screening pipelines to advance translational research.

This integrated network of platforms will transform patient care and brain cancer research in Australia, leading to the improvements in survival so long overdue for this cancer group.