Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2016 Aug 22;10(5):1015-26.
doi: 10.1177/1932296816648983. Print 2016 Sep.

Australasian Diabetes Data Network: Building a Collaborative Resource

Helen Clapin  1 , Helen Phelan  2 , Loren Bruns Jr  3 , Richard Sinnott  3 , Peter Colman  4 , Maria Craig  5 , Timothy Jones  6 ; Australasian Diabetes Data Network (ADDN) Study Group
Affiliations

Australasian Diabetes Data Network: Building a Collaborative Resource

Helen Clapin et al. J Diabetes Sci Technol. .

Abstract

Australasia is a region with a high incidence of type 1 diabetes (T1D). There are approximately 140 000 individuals with T1D, and of these 10 000 are children. Although the region covers a huge geographical area, most children with T1D are managed by tertiary academic centers in the major capital cities. Local longitudinal data collection has been in place for several decades in most of these centers, however ongoing national data collection had not been attempted. In 2012, with funding from the Juvenile Diabetes Research Foundation (JDRF) Australian Type 1 Clinical Research Network, a national collaboration was formed to provide ongoing longitudinal collection of T1D patient characteristics and outcomes. The initial phase of this collaboration, known as the Australasian Diabetes Data Network or ADDN, was led by the Australasian Paediatric Endocrine Group (APEG) and thus included only children and adolescents. The next phase, commenced in 2016, will see adult sites added through collaboration with the Australian Diabetes Society (ADS). As most of the initial centers had longitudinal data collection in place the model employed was to establish the transfer and collation of data already collected into a central database. This required the definition of a common data dictionary, ethics and governance procedures and the employment of technology to enable efficient and accurate information transfer and accessibility. The ADDN project received widespread support from the diabetes research community with study investigators representing 20 pediatric centers across the region. The first phase focused on the 5 largest centers and at the end of 2015 these centers were uploading patient data to the ADDN database on a quarterly basis resulting in 5271 patients with 83 506 diabetes visits.

Keywords: database; information; longitudinal; pediatric.

PubMed Disclaimer

Conflict of interest statement

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Figures

Figure 1.
Figure 1.
High level ADDN architecture. Local database DPMS (Diabetes Patient Management System) is used at PMH (WA), RCH (Vic), and WCH (SA); EPMS (Endocrine Patient Management System) is used at CHW (NSW).
Figure 2.
Figure 2.
Query builder interface.
Figure 3.
Figure 3.
Model for data access.
See this image and copyright information in PMC

References

    1. Catanzariti L, Faulks K, Moon L, et al. Australia’s national trends in the incidence of type 1 diabetes in 0-14 year olds, 2000-2006. Diabet Med. 2009;26:596-601. - PubMed
    1. Cameron F, Cotterill A, Couper J, et al. Short report: care of children and adolescents with diabetes in Australia and New Zealand: have we achieved the defined goals? J Paediatr Child Health. 2013;49(4):E258-E262. - PubMed
    1. Taplin CE, Craig ME, Lloyd M, et al. The rising incidence of childhood type 1 diabetes in New South Wales, 1990-2002. Med J Aust. 2005;183:243-246. - PubMed
    1. Haynes A, Bower C, Bulsara MK, Jones TW, Davis EA. Continued increase in the incidence of childhood type 1 diabetes in a population-based Australian sample (1985-2002). Diabetologia. 2004;47:866-870. - PubMed
    1. Chong JW, Craig ME, Cameron FJ, et al. Marked increase in type 1 diabetes mellitus incidence in children aged 0-14 yr in Victoria, Australia, from 1999 to 2002. Pediatr Diabetes. 2007;8:67-73. - PubMed

Publication types