Project

Health and medical research in Australia significantly improve the health of the population. But a major research challenge remaining is the timely identification of eligible research participants.

The development of the Join Us register—Australia’s first disease agnostic research participant register—is a response to current health emergencies such as the COVID-19 pandemic. It also delivers longterm benefits for medical research and health outcomes. This is achieved through an online consent registration process and reaching out to participants about relevant opportunities to participate in health and medical research.

The register is open to all Australian adults. As part of registration, participants are asked to provide informed consent to be contacted for future research. They complete a brief questionnaire consisting of a few items about sociodemographic characteristics and health conditions or diagnoses. The participants are also invited to provide consent for linkages and extraction of their health records from databases managed by relevant government agencies and other care providers.

All research studies seeking support through the Join Us register for participant recruitment are required to have approval from a relevant human research ethics committee before using the register. The Join Us register will then forward research invitations to participants with the characteristics matching the study inclusion and exclusion criteria.

In the first year of operation, more than fifty research, health and non-government and consumer organisations joined the Register as Partners. The register assisted about 20 clinical trials with their recruitment. Further leveraging on the routinely collected data of the Join Us register will become a versatile resource for supporting diverse health research in Australia—strengthening Australia’s research capacity, productivity and sustainability.