Investigators: Tim Jones, Liz Davis
Study Staff: Jennifer Brooks, Madeleine Lowe, Adam Retterath, Helen Clapin, Vinutha Shetty, Nirubasini Paramalingam, Matthew Cooper
This diabetes register was established at Princess Margaret Hospital (now Perth Children's Hospital) in 1987 which stores data on all consenting patients attending the hospital’s diabetes clinic. In Australia, all children diagnosed with type 1 diabetes (T1DM) are admitted to hospital at the time of diagnosis. As PMH is the only children’s teaching hospital in Western Australia (WA), all children diagnosed with diabetes are seen by the diabetes department at this hospital. Since the diabetes register was set up, over 99% of children newly diagnosed with T1DM have consented to being registered in the register. This means that the register contains data on almost all children diagnosed with T1DM under the age of 15 years in WA, and can be used to accurately describe their characteristics.
A history of T1DM in the parents and siblings of children diagnosed with T1DM has been collected by the diabetes clinicians since 1992. Since 2005, this data collection has extended to include type 2 diabetes and other diseases associated with T1DM. This population based database for childhood is a valuable resource which will allow us to investigate the relationship between associated diseases may add to the understanding of their underlying mechanisms.
The data is collected using a questionnaire, either at the time of diagnosis for newly diagnosed patients, or during routine follow-up appointments, for patients attending the diabetes clinic. Data access will be restricted to relevant clinical and authorised research staff only. Consent is obtained from newly diagnosed patients or their parents prior to the collection and storage of incidence data and family history data in the diabetes register. Patient confidentiality is maintained.
Funders
- Departmental