International Spinal Cord Injury Data Sets

Abstract

Study design: Discussion and development of final consensus.

Objective: Present the background, purpose, and process for the International Spinal Cord Injury (SCI) Data Sets development.

Setting: International.

Methods: An international meeting on SCI data collection and analysis occurred at a workshop on May 2, 2002, before the combined meeting of the American Spinal Injury Association (ASIA) and the International Spinal Cord Society (ISCoS) in Vancouver, British Columbia, Canada. At this meeting, a process was developed for selection of data elements to be included in International SCI Data Sets.

Results: An overall structure and terminology has been developed following the format of the International Classification of Functioning, Disability and Health (ICF). This includes definitions of the Core Data Set, as well as Modules with Basic Questions or Data Sets and Expanded Data Sets. The Core Data Set has been developed and will be presented separately. Working groups for additional modules are being established as well as general guidelines for the development of the modules.

Conclusion: The presented format should help in developing data sets and modules within various topics related to SCI.