Spinal Cord Injury (SCI) is fortunately quite rare, but this low rate of incidence makes it hard to coordinate improvements in health status and care in this area. Researchers are addressing this challenge, by establishing a detailed, flexible, electronic database for the collection of information about SCI patients and their health outcomes.

In Victoria, many SCI patients are managed from accident onwards by the Victorian Spinal Cord Service (VSCS) at Austin Health.

Before this project, the VSCS had no electronic register of its patients, relying instead on the limited database led by the National Injury Surveillance Unit.

Electronic registries or databases are important because they gather complex, accurate information as a usable resource.

This information can then be used to improve service planning, develop crucial research projects, or collaborate with national and international SCI partners.

A research team supported by ISCRR and the Spinal Research Institute, and led by Dr David Berlowitz from the Institute of Breathing and Sleep, sought to develop a collaborative, secure, web-based database for VSCS, and to establish new processes that would make the collection of information for this database a routine part of SCI care.

Status

The research team concluded their work in 2013 with the delivery of final report, outlining their developed research database and proposed data collection protocol.

Notably, their protocol includes "rewards" (such as the use of iPads) for clinical staff nominated to collect information.

The database is now live and data is presently being collected. This data will be used in a VSCS research project planned to commence in 2016.

Researchers wishing to access this data should contact Dr Berlowitz.