Colorectal cancer databases and registries in Australia: what data is available?

There are multiple data sources relating to colorectal cancer (CRC) nationwide. Prospective clinical cancer databases, population-based registries and linked administrative data are powerful tools in clinical outcomes research and provide real-world perspective on cancer treatments. This study aims to review the different Australian data sources for CRC from the perspective of conducting comparative research studies using a PICO (patient, intervention, comparison, outcome) framework.

Data dictionaries from the different data sources were evaluated for the types of exposure and outcome variables contained to highlight their differing research utility.

State or territory-based cancer registries contain limited histology, cancer staging and treatment detail. They enable investigation of population-level patterns in overall survival (OS) of cancer patients with different demographics. Prospective clinical cancer databases contain more detail, especially surgical. Their strength is in auditing short-term surgical outcomes. They vary in the amount of data collected for other cancer treatments and completion of follow up data. Linked administrative databases have broad population coverage but less surgical detail. They provide population-level data on treatment patterns, short-term outcome measures and OS, as well as long-term surgical outcomes such as identifying patients who did not undergo stoma reversal. These databases cannot assess disease-free survival.

Of the various CRC data sources within Australia, linked administrative databases have the potential to provide the widest population coverage combined with the broadest range of exposures and outcomes, and arguably the most research utility.