The Australasian Type-1 Diabetes Research Platform

1Richard O. Sinnott, 1Loren Bruns, 2Helen Clapin, 3Peter Colman, 4Maria Craig, 3Leon Heffer, 2Tim Jones, 1Jiajie Li 2Jane Makin, 4Helen Phelan, 3Maureen Turner on behalf

of the ADDN Investigators 1University of Melbourne,

2Princess Margaret’s Hospital, Perth, 3Royal Melbourne Hospital, Melbourne,

4Westmead Hospital, Sydney

Contact Author: rsinnott@unimelb.edu.au Abstract or Summary (2 pages max) The Australasian Diabetes Data Network (ADDN - http://addn.org.au) is a cloud-based registry of diabetes-related phenotypic data captured from major child/juvenile and adult diabetes clinics across Australia. The ADDN portal provides authorised clinicians and researchers with access to an extensive collection of data made available from pre-existing hospital systems. This registry allows clinicians to generate aggregate reports and statistics on their patients and benchmark their data with other centres. The systems also allows diabetes researchers to define and design nationwide clinical trials and studies based on a statistically significant population of patient data, where the patients have typically already consented to be contacted for future research. The ADDN systems include data from 4306 active patients from 5 major diabetes centres across Australia (June 2015).

The original ADDN platform was funded by the Juvenile Diabetes Research Foundation (JDRF - http://jdrf.org) to support the Australasian Paediatric Endocrine Group (APEG - http://www.apeg.org.au). At the end of 2015, the ADDN project received further funding from JDRF to extend the platform to other centres and incorporate adult data, with requirements for longitudinal tracking of child-adult information. This work is to support both APEG as well as the Australian Diabetes Society (ADS - https://diabetessociety.com.au), which also includes a focus on adult patients.

At present, the ADDN registry captures sixty-plus data points about each patient and ninety-plus data points for each visit spanning the patient’s history from their original diagnosis to their ongoing condition. The data itself is provided in periodic batches from major hospitals in Australian capitals, with subsequent phases including centres in New Zealand and across rural Australia.

This talk will provide an overview of the ADDN project, discussing the technical aspects of designing and implementing the registry, the underlying security model and associated search tools as well as highlight the challenges involved in designing and populating a composite dataset from clinical records stored across highly disparate and heterogeneous IT environments.

Work has also progressed on development and delivery of mobile applications to augment the web-based registry. The talk will also cover the increasing use of mobile technology in the health domain and outline how the ADDN project has established both iOS and Android mobile applications to support the registry itself. Future work is exploring how patient reported information can also be incorporated into registries such as ADDN through mobile technologies.

Finally through work on projects such as the Australian Urban Research Infrastructure Network (AURIN – www.aurin.org.au) capabilities now exist that support geospatial analysis of the ADDN patient data, which can often include postcodes. Through such geospatial capabilities, we are able to explore correlations between prevelance of type-1 diabetes and socio-economic factors, environmental factors, impact on educational achievement amongst other things. All of these other data sets are currently available through the AURIN platform.

Figure1:ADDNPatientsRecruited(June2016)

Figure2:ADDNMobileApplications

Figure3:GeospatialVisualisationofADDNPatientData(December2015)

Author(s)bios(250wordsmax) Prof. Richard O. Sinnott is the Director of eResearch & Chair of Applied Computing Science at the University of Melbourne. He has published over 250 peer-reviewed papers in conferences/journals across a wide range of computing science areas with specific focus over the last ten years in supporting communities demanding finer-grained access control (security). He is a co-lead investigator on the ADDN Phase 2 project. Dr Loren Bruns Jr. is the lead software developer on the registry supporting the Australasian Diabetes Data Network. Loren hails originally from Portland, Oregon, in the United States. He joined the Melbourne eResearch Group as a full-time web and backend developer in 2012. He has a PhD in astrophysics awarded in 2016 from the University of Melbourne. Jiajie Li is a software developer in the Melbourne eResearch Group with a specific focus on mobile applications and disease registries. Helen Clapin, Helen Phelan and Jane Makin are project managers for the ADDN and ADDN Phase 2 project. Maureen Turner is the chief executive officer of the BioGrid project. Leon Heffer is the head of data services at BioGrid. Prof. Peter Colman is an endocrinologist based at the Royal Melbourne Hospital. He is a co-lead investigator on the ADDN Phase 2 project. Assoc. Prof. Maria Craig is an endocrinologist based at Westmead Hospital, Sydney. She is a co-lead investigator on the ADDN and ADDN Phase 2 projects. Prof. Tim Jones is an endocrinologist based at Princess Margaret’s Hospital, Perth. He is a co-lead investigator on the ADDN and ADDN Phase 2 projects. The ADDN investigators include: Prof. Maria Craig, Prof. Tim Jones, Prof. Peter Colman, Prof. Richard O Sinnott, Prof. Geoff Ambler, Prof. Jenny Batch, Dr Phil Bergman, Prof. Fergus Cameron, A/Prof Louise Conwell, A/Prof Andrew Cotterill, Prof. Jennifer Couper, A/Prof Elizabeth Davis, Prof. Kim Donaghue, Dr Jan Fairchild, Dr Leonie Gray, Prof. Paul Hofman, Dr Neville Howard, A/Prof Michelle Jack, Dr Craig Jefferies, A/Prof Bruce R King, Dr Anthony Lafferty, Dr Robert McCrossin, Dr Mark Pascoe, Dr Alexia Peña, A/Prof Darrell Price, A/Prof Christine Rodda, Dr Alan Sive, A/Prof Carmel Smart, Dr Monique Stone, Dr Elaine Tham, Dr Charles Verge, Prof. Jerry Wales, Dr Tim Warnock, Dr Judy Williams, Dr Michael Williams, A/Prof Esko Wiltshire, Dr Nick Woolfield and Prof. Sophia Zoungas.