Development and utilisation of the Australian spinal cord injury register.
OBJECTIVE
To document the development and utilisation of the Australian Spinal Cord Injury Register.


METHODS
Review of published material and consultative processes.


RESULTS
The development of a national population based register of spinal cord injury (SCI) was first mooted in Australia in 1987.1 Wigglesworth,2 in the journal Paraplegia, outlined the planning process for such a register. Later, in the journal Spinal Cord, Blumer and Quine3 reported on the identification of the information needs that could be met by a register. However, it was not until 1 July 1995 that the Australian Spinal Cord Injury Register was established, providing the means of achieving the objectives outlined in the Menzies Foundation reports. 1,4 From that date the registration of cases became an integral part of the routine admission process of the six specialist centres for the treatment of SCI. This, in combination with a process of case note review to identify earlier cases, has ensured that all cases of SCI due to trauma admitted to spinal units have been registered from 1986, providing a significant national database for epidemiological and research purposes.


CONCLUSIONS
The main lessons to be learned from the Australian experience are: (1) that it is possible, in cooperation with the Directors of specialist treatment units, to design, implement and maintain a national population-based register, at relatively small financial cost; and (2) that a register provides data for important information and research purposes. As it is unlikely that Australia has unique conditions for the development of a registry, this experience should encourage others. There are however some lessons to be learned, and procedures to be put in place, described in this article, to ensure that data from a registry is useful for advancing the prevention and treatment of SCI.
O'Connor
P J
PJ
Research Centre for Injury Studies, Flinders University, Bedford Park, Adelaide, SA 5042, Australia.
D001315:Australia / Q000453:epidemiology; D003625:Data Collection; D019992:Databases as Topic; D006801:Humans; D010865:Pilot Projects; D012042:Registries; D013119:Spinal Cord Injuries / Q000453:epidemiology*