Abstract：
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.
journal_name
Spinal Cordjournal_title
Spinal cordauthors
O'Connor PJdoi
10.1038/sj.sc.3101048subject
Has Abstractpub_date
2000-10-01 00:00:00pages
597-603issue
10eissn
1362-4393issn
1476-5624journal_volume
38pub_type
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