Who We Are
ADDN is a research collaboration among Australia’s largest diabetes centres who have come together to share information within a strict ethical and governance framework with the ultimate aim to improve clinical practice and treatment to diabetes patients. Funding for phase 1 (ADDN1) was provided by JDRF, to establish the data registry infrastructure and framework for collaboration.
Current members of ADDN sharing clinical diabetes data are:
- John Hunter Children's Hospital, NSW
- The Children’s Hospital at Westmead, NSW
- Lady Cilento Children’s Hospital, QLD
- Women’s and Children’s Hospital, SA
- Monash Children's Hospital, VIC
- Royal Children’s Hospital, VIC
- Royal Melbourne Hospital, VIC
- Princess Margaret Hospital for Children, WA
ADDN1 received support from the majority of paediatric diabetes centres throughout Australia and New Zealand. This first phase of ADDN began in 2012 and concluded in December 2015 with five of the largest paediatric diabetes clinics in Australia sharing data of more than 4,000 children and young people with diabetes. ADDN1 includes a registry query tool that can be used to establish the number of patients meeting a broad range of selection criteria (to assist with study planning) and access to a number of reports with fully configurable parameters designed to facilitate improvement in diabetes management. This phase focused on developing an agreed dataset and data dictionary, implementing a governance structure and guidelines for data access, designing and delivering a web-based registry, collaborating with international registries and reporting national diabetes outcomes in juveniles. ADDN1 outcomes have been recently published.
Following on from the success in ADDN1, the second phase of ADDN (ADDN2) commenced in early 2016. Additional paediatric sites will be included along with some adult diabetes centres. The aim over the next three years is to expand the project to link 14 diabetes centres across Australia and pool data from up to 14,000 participants. One of the major outcomes of ADDN2 is to follow a cohort of young people as they transition from paediatric diabetes centres to adult diabetes centres. The focus of ADDN2 is improving the completeness and quality of the data and collaborating with researchers to use the data to answer important clinical questions.