Executive summary

Beginning in 1986, data on spinal cord injury was collected by spinal units in New South Wales and registered using a system devised by Mr. John Walsh an actuary. It later developed into a national register and continued to operate until the end of 1991.

After the support of major funders concluded at the end of 1991, the National Injury Surveillance Unit (NISU) commissioned a study to investigate the demand for information on Spinal Cord Injury (SCI) occurrence and ways in which it could be satisfied.

As the principal mode of inquiry, interviews were carried out with a range of data users and unanimous support for a system of State and National surveillance was found. There was wide agreement on methods to be used for data collection.

This report makes the following recommendations.

That a register of incident cases be established, and that a uniform core surveillance data set be agreed upon by spinal unit directors.

That collection and entry of core data items be incorporated into the routine registration of cases by spinal units. The potential for obtaining some of these data directly from other hospital information systems should be investigated by spinal unit directors.

That NISU manage a central collection of core data, with appropriate safeguards.

That NISU further prepare regular statistical summaries from a national perspective and to provide an ad hoc information service. Depending on the level of work involved a source of designated on-going funding may be necessary.

In order for these recommendations to be implemented the report further recommends that:

The need for special software to enable reporting within spinal units and to NISU be considered with regard to specific functions required, and funding to specify and develop this software should be sought.

The form and content of feedback and reports to be provided by NISU be considered in detail in consultation with spinal units.

A paper system of registration of incident cases be introduced as soon as possible to recommence registration, pending development of a computerised system.

Available evidence suggests that the population of people with spinal injury is ageing rapidly, and may thus be developing special needs for support and treatment. It is recommended that a register of prevalent cases be established to investigate and monitor the needs of this group. Steps to be taken in order to develop this are:

  • Establish a baseline register utilising existing SCI incident cases on the SCI register (once it is developed) and those cases of SCI readmitted to hospital and identified as unregistered SCIs.
  • Monitor incident cases through the incidence register.
  • Monitor deaths through the use of National Deaths Index.