Diabetes research within Australia is constrained by the lack of a formal structure for collaboration and generation of research. Although centres have local databases that contain longitudinal data, a major barrier to merging data has been inconsistency in the data sets. The Australasian Paediatric Endocrine Group (APEG) in collaboration with Juvenile Diabetes Research Fund (JDRF) are seeking to address this with ADDN.
ADDN aims to improve data generation and sharing of data routinely collected. This will enable recruitment for trials in new onset and established diabetes; enrolment of patient cohorts for cross sectional and longitudinal research; long-term monitoring of diabetes outcomes and extension of the database to include adults; linkage of biobank (DNA, serum) with clinical phenotype in people with type 1 diabetes.
A secure, centralized database with software interfaces will be established to enable automatic transfer of data from local clinical databases. An agreed dataset has been negotiated to ensure local data are compatible with the central database. The first phase of the project will see five major diabetes centres in Australia linked to the central database. In further phases regional centres throughout Australia and major centres in New Zealand will be connected to ADDN.
To date, 27 paediatric diabetes centres throughout Australia and New Zealand have enlisted in the project. Ethics approval has been granted in a number of major centres and recruitment of participants is underway. A prototype ADDN, with data dictionary reflective of the negotiated minimum dataset, is under review by the ADDN committee.
ADDN has enormous potential to change the face of diabetes research in Australia and New Zealand. ADDN will need the cooperation of healthcare professionals, IT departments, children and their families and the wider diabetes community, to become fully established.