Abstract
Study design:
Multifaceted: extensive discussions at workshop and conference presentations, survey of experts and feedback.
Objectives:
Present the background, purpose and development of the International Spinal Cord Injury (SCI) Data Sets for Non-Traumatic SCI (NTSCI), including a hierarchical classification of aetiology.
Setting:
International.
Methods:
Consultation via e-mail, presentations and discussions at ISCoS conferences (2006–2009), and workshop (1 September 2008). The consultation processes aimed to: (1) clarify aspects of the classification structure, (2) determine placement of certain aetiologies and identify important missing causes of NTSCI and (3) resolve coding issues and refine definitions. Every effort was made to consider feedback and suggestions from participants.
Results:
The International Data Sets for NTSCI includes basic and an extended versions. The extended data set includes a two-axis classification system for the causes of NTSCI. Axis 1 consists of a five-level, two-tier (congenital-genetic and acquired) hierarchy that allows for increasing detail to specify the aetiology. Axis 2 uses the International Statistical Classification of Diseases (ICD) and Related Health Problems for coding the initiating diseases(s) that may have triggered the events that resulted in the axis 1 diagnosis, where appropriate. Additional items cover the timeframe of onset of NTSCI symptoms and presence of iatrogenicity. Complete instructions for data collection, data sheet and training cases are available at the websites of ISCoS (http://www.iscos.org.uk) and ASIA (http://www.asia-spinalinjury.org).
Conclusions:
The data sets should facilitate comparative research involving NTSCI participants, especially epidemiological studies and prevention projects. Further work is anticipated to refine the data sets, particularly regarding iatrogenicity.
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Acknowledgements
There are many people who participated in the consultative process that assisted us in developing this data set. We thank the more than 120 people who provided suggestions and feedback in the rounds of e-mail discussion and the participants at a workshop held at the 2008 ISCoS meeting in Durban, South Africa. We would especially thank Dr Claire Weeks (Division of Rehabilitation Medicine, University of British Columbia, Vancouver, Canada), Professor Peter Wing (Division of Spine, University of British Columbia, and Rick Hansen Institute, Canada), Dr Ronald Reeves (Department of Physical Medicine and Rehabilitation, Mayo Clinic College of Medicine, Rochester, MN, USA) and Professor Ahmad Bhigjee (Department of Neurology, Nelson R Mandela School of Medicine, Inkosi Albert Luthuli Central Hospital, Mayville, South Africa) for their participation in the workshop. Mr Tim Muecke provided assistance with workshop management and information technology. Dr Bonne Lee (Spinal Medicine Department, Prince of Wales Hospital, Sydney, New South Wales, Australia), Dr Marcel Post (Centre of Excellence in Rehabilitation Medicine, Rehabilitation Centre De Hoogstraat, Utrecht, The Netherlands) and especially Dr Ronald Reeves, are thanked for providing constructive suggestions on near final drafts of the data sets. Professor Elsdon Storey (Professor of Neuroscience and Director, Van Cleef Roet Centre for Nervous diseases, Monash University, and Head, Neurology Unit, Alfred Hospital, Melbourne, Australia) and Professor Ahmad Bhigjee are thanked for their valuable assistance with refining aspects of the classification.
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Appendix
Appendix
Table A1. INTERNATIONAL SPINAL CORD INJURY DATA SETS. NON-TRAUMATIC SPINAL CORD INJURY DATA FORM
Table A2. Basic data set
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New, P., Marshall, R. International Spinal Cord Injury Data Sets for non-traumatic spinal cord injury. Spinal Cord 52, 123–132 (2014). https://doi.org/10.1038/sc.2012.160
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DOI: https://doi.org/10.1038/sc.2012.160
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