Research registries: the power of data to improve healthcare

Most Australians come into contact with registries when they receive a reminder to book a mammogram or get screened for bowel cancer.

But registries can do much more than this, when the information they capture is used in research to shed light on how diseases and treatments affect large groups of people. They can:

  • reveal how new or repurposed drugs, or combinations of drugs perform in the real world, and make clinical trials better
  • show how specific groups of people respond to different interventions, including different devices and surgical techniques.

As Australia’s largest registries manager, with about 45 hosted by the Sub-Faculty of Translational Medicine and Public Health, Monash University has extensive experience in establishing and maintaining clinical and research registries, balancing the privacy of individuals with the benefits of registry research to public health. For comprehensive information on this portfolio, visit the School of Public Health and Preventive Medicine.

See below for research registries managed by the School of Translational Medicine.

Australian Cerebellar Ataxia Registry

The registry is a contact list of individuals with cerebellar ataxia who are willing to be contacted for participation in research studies and clinical trials.

Bariatric Surgery Registry

The primary aim of the Bariatric Surgery Registry is to measure outcomes for patients undergoing bariatric surgery across public and private hospitals in Australia and New Zealand.

CoviDiab Registry

This registry is specifically designed to establish the extent and characteristics of new-onset, COVID-19-related diabetes, and to investigate its pathogenesis, management and outcomes.

NeuroCOVID-19 Registry

The Australia and New Zealand NeuroCOVID-19 data registry is a rapid data collection framework that captures cases of COVID-19 infected people with neurological symptoms or those with pre-existing chronic neurological disorders.