The Australasian Diabetes Data Network (ADDN)
The Australasian Diabetes Data Network (ADDN) project captures clinical data from thousands of people living with type 1 diabetes on a single purpose built database.
Australia has one of the highest rates of type 1 diabetes, affecting over 120,000 people, with 2700 new onset cases in 2017. Over half of people living with diabetes are children or adolescents, with most of these young people receiving their clinical care in central, tertiary academic centres.
ADDN takes advantage of this centralised form of clinical care within Australia. In the first phase of the ADDN project, patient data was collected from five specialist paediatric tertiary centres across the country. The de-identified data is now connected on a single platform, allowing researchers to monitor progress of clinical outcomes representative of close to 80% of newly diagnosed children living with type 1 diabetes in Australia.
The T1DCRN is continuing to support this important project during its next phase in partnership with the Australasian Paediatric Endocrine Group (APEG). There are currently 9 paediatric hospitals and 7 adult hospitals incorporated into the database with over 15,000 patients connected to ADDN.
The range of possibilities this opens up for research and clinical care improvements is enormous. Researchers will be able to answer questions such as how type 1 diabetes progresses over time, when complications develop, and how different models of care impact on clinical outcomes.
To find out about how you can participate in ADDN, contact: email@example.com
- Population based recruitment of young people for trials in new onset and established type 1 diabetes (T1D)
- Enrolment of patient cohorts for specific cross sectional and longitudinal research
- Long term monitoring of diabetes outcomes in the population and proposed extension of the database to include adults with T1D, thus providing a valuable resource for studies involving adult subjects
- Linkage of biobank (DNA, serum) with a registry of clinical phenotype in a population based sample of TID.
- Prospective register of new onset cases of type 1 diabetes registered at diagnosis
- Recruitment of prevalent cases of type 1 diabetes attending participating diabetes centres
- Database follow up of cases recruited in (A) and (B) into adulthood
- Associate Professor Maria Craig, The Children’s Hospital Westmead, Sydney
- Professor Timothy Jones, Princess Margaret Hospital Perth
- Professor Peter Colman AM, Royal Melbourne Hospital
- Professor Richard Sinnott, University of Melbourne
The Australian Type 1 Diabetes Clinical Research Network, JDRF
There will be five major hubs located in the major capital cities (NSW, WA, VIC, SA, QLD), and 16 additional sites across Australia.
- Sydney Children’s Hospital Network (Westmead and Randwick)
- A/Prof Maria Craig (PI), Prof Kim Donaghue
- Princess Margaret Hospital
- Prof Tim Jones (PI), A/Prof Liz Davis
- Royal Children’s Hospital
- Prof Fergus Cameron
- Women’s and Children’s Hospital
- Prof Jenny Couper
- Royal Children’s Hospital
- A/Prof Andrew Cotterill
The primary endpoint is establishment of a successful national clinical trials network and database, as demonstrated by:
- Recruitment of the majority of new onset cases over 3 years (>80%) in Australia.
- Documentation of baseline data on incident cases, with up to 3 years of longitudinal data on approx 2/3 of cases (diabetes management, HbA1c, hypoglycemia, complications and co-morbidities)
- Recruitment of existing cases on the APEG diabetes incidence register and in pediatric diabetes centers nationally.
- Diagnosis of T1D, based on American Diabetes Association criteria,
- Recently diagnosed (within 2 months of onset for new onset studies), or established T1D
- Male or female
- Child, adolescent or young adult
- Willing to comply with schedule of events and protocol requirements.
- Diagnosis of T2D, monogenic diabetes
Establishement of a national, shared database capturing clinical information from the majority (>80%) of paediatric type 1 diabetes patients. Hypothesis driven research questions fundamental to pediatric diabetes care will be addressed by the establishment of a national longitudinal pediatric diabetes network and database. These include prediction of clinical outcomes based on patient characteristics, immunological signatures, biomarkers at diagnosis, correlates of psychosocial morbidity, effects of technological interventions, prediction of complications and benchmarking/comparison with international centers.
December 2012 – August 2019. Extended to 2020 to allow further expansion.
Photo: The Casitovski family who are participating in the ADDN project.