Research

Registry

International registries have provided valuable insight into care and outcomes of people with T1D. In Australia separate state based registries have existed for over 20 years. The National Diabetes Register (NDR) which sources data from state based registries, reports the incidence and prevalence of diabetes.

The ADDN Registry holds longitudinal de-identified data and was established to provide a national data source to foster collaborative research and improve clinical care. With the inclusion of adult diabetes centres, it is now possible for the ADDN Registry to report on Type 1 Diabetes patients from diagnosis as juveniles through to on-going treatment as adults.

Participating centres upload data to ADDN every 6 months. Comprehensive data validation rules and error reports have been implemented to ensure data quality.  More information on the methodology used within ADDN can be found here.

If you would like to enquire about using the data in ADDN for your research, please submit your enquiry using the form here.

 

INCLUSION CRITERIA

  • Children and adolescents (≤ 18 years) :  diagnosis of either T1D, Type 2 diabetes (T2D), Cystic Fibrosis Related Diabetes (CFRD), Monogenic diabetes, Neonatal Diabetes and other rarer forms of diabetes.
  • Adults (>18 years) :  all adults diagnosed with T1D or adults with other types of diabetes who have transitioned from a participating paediatric diabetes centre.
 

Report of ADDN Diabetes Centres

Data currently available in the ADDN Registry has provided, for the first time, a snapshot profile of paediatric patients attending diabetes centres at the ADDN tertiary public hospitals.

The information contained in the following table represents data from the paediatric diabetes centres at following hospitals:

  • Children’s Hospital at Westmead, Sydney, NSW
  • The John Hunter Children’s Hospital, Newcastle, NSW
  • The Royal Children’s Hospital, Melbourne, VIC
  • The Women’s and Children’s Hospital, Adelaide, SA
  • The Princess Margaret Children’s Hospital, Perth, WA
  • The Lady Cilento Children’s Hospital, Brisbane, QLD

Disclaimer

The information provided is correct as of the date indicated. While representative of patients attending the ADDN paediatric diabetes centres, it is not reflective of the entire juvenile (0 to 18 years) diabetes population in Australia. If you have any questions or want to know more about the data in ADDN, you can contact us here.

Notes Regarding the Data

  • Table generated date: 26 September 2016
  • Data load period: 5 April 2016 – 25 July 2016
  • Data are presented as n (%), mean (SD) or median [IQR]
  • Other Diabetes: includes neonatal diabetes, monogenic diabetes, and cystic fibrosis related diabetes
  • Age = mean age for eligible visits occurring during the data load period
  • Insulin Treatment = most recently recorded insulin regimen
  • HbA1c = mean HbA1c calculated for all eligible visits
 

Publications

  • Phelan H, Clapin H, et al; The Australasian Diabetes Data Network: first national audit of children and adolescents with type 1 diabetes. Med J Aust. 2017 Feb 20; 206(3):121-125
  • Clapin H, Phelan H, et al; Australasian Diabetes Data Network: Building a Collaborative Resource. J Diabetes Sci Technol. 2016 Aug 22; 10(5):1015-26
  • Maria E Craig, Nicole Prinz, Claire T. Boyle, Fiona M Campbell, Timothy Jones, Sabine E Hofer, Jill H Simmons, Naomi Holman, Elaine Tham, Elke Fröhlich-Reiterer, Stephanie DuBose, Helen Thornton, Bruce King, David M. Maahs, Reinhard W Holl and Justin T Warner on behalf of the Australasian Diabetes Data Network (ADDN), the T1D Exchange Clinic Network (T1DX), the National Paediatric Diabetes Audit (NPDA) and the Royal College of Paediatrics and Child Health, and the Prospective Diabetes Follow-up Registry (DPV) initiative; Prevalence of Celiac Disease in 52,721 Youth with Type 1 Diabetes: international comparison across three continents. Diabetes Care. 2017 May 25 [Epub ahead of print]
 

Projects

  • Dr Marie-Anne Burckhardt, Princess Margaret Hospital for Children - Long-term glycaemic control of children with type 1 diabetes on insulin pump therapy in a population based case-control study across paediatric centres in Australia.
  • Prof Richard Sinnott, University of Melbourne - ADDN Mobile Application.