ADDN: Australasian Diabetes Data Network

There were 134,735 people with type 1 diabetes registered with the Australian National Diabetes Services Scheme (NDSS) as of 30th September 2022, and 4090 new people registered over the last 12 months. In 2020 there were 3107 diagnoses of type 1 diabetes in Australia, and over half of these were in children or young people under 25. The highest incidence rate of type 1 diabetes is in children between 10 and 14, at around 35 cases per 100,000 people in the population (AIHW).

The clinical management of type 1 diabetes involves the replacement of insulin by injection or infusion, adherence to a well-balanced diet and regular physical activity, with monitoring of blood glucose either intermittently or continuously. The overall aim of treatment is to normalise blood glucose levels to prevent the complications that develop when blood glucose levels are high, whilst also avoiding the major side effect of insulin therapy - low blood glucose or ‘hypoglycaemia’.  

The rollout of subsidised continuous glucose monitoring (CGM) and flash glucose monitoring (Flash GM) technology for Australians with type 1 diabetes commenced in April 2017, through the NDSS. From 1 March 2020, eligibility was extended to women with type 1 diabetes during pregnancy, people with type 1 diabetes over 21 without concessional status, and insulin-requiring individuals under 21 with conditions similar to type 1 diabetes. The rollout was recently expanded to all Australians with type 1 diabetes from 1 July 2022. Subsidised insulin pumps are also available in Australia for low-income families through the Insulin Pump Program, funded by JDRF.

Technological advancements have enabled the establishment of clinical databases which capture health information about all people with diabetes (type 1, type 2, or other forms such as monogenic or cystic-fibrosis-related diabetes) as they visit their clinic for related care.

The Australasian Diabetes Data Network (ADDN) registry has been built to enable the collection of health information from these clinical databases on a single platform. This allows for routine surveillance of clinical outcomes at a multi-national level and also provides an opportunity for researchers to address important clinical questions in diabetes care. ADDN is now registered as a Clinical Quality Registry on the Australian Register of Clinical Registries, which was developed by the Australian Commission on Safety and Quality in Healthcare (under registration ACSQHC-ARCR-467).

The major goals of ADDN are to:

  • ensure optimal delivery of care for people with type 1 diabetes 

  • increase access to technology (such as continuous glucose monitoring and insulin pumps, including hybrid closed-loop systems)

  • improve the individual journey across all stages of diabetes (including Stage 1 diabetes, defined as multiple islet autoantibodies)

  • benchmark and provide actionable information to participating centres about their clinical outcomes  

  • monitor long-term outcomes for people with diabetes 

  • provide epidemiological and clinical evidence in support of advocacy on behalf of people with diabetes, and 

  • facilitate recruitment of children, adolescents and adults with type 1 diabetes in Australia and New Zealand to research studies

ADDN is a collaboration between the Australia and New Zealand Society for Paediatric Endocrinology and Diabetes (ANZSPED; formerly known as APEG), the Australian Diabetes Society (ADS), JDRF Australia, the University of New South Wales (UNSW), the University of Melbourne, and the many diabetes centres represented by the ADDN Study Group. ADDN also has affiliations with the National Association of Diabetes Centres (NADC).

ADDN is supported by the Australian Type 1 Diabetes Research Clinical Research Network (T1D CRN), led by JDRF Australia. JDRF is the recipient of Australian Government funding from the Australian Research Council (through a Special Research Initiative) and the Department of Health and Ageing. Click here for more information about T1D CRN and the research they undertake.