title: International Spinal Cord Injury Data Sets for non-traumatic spinal cord injury.
abstract: METHODS
  Multifaceted: extensive discussions at workshop and conference presentations, survey of experts and feedback.
  
  
  OBJECTIVE
  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.
  
  
  METHODS
  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.
authors.affiliation: 1] Spinal Rehabilitation Unit, Rehabilitation Services, Caulfield Hospital, Caulfield, Victoria, Australia [2] Epworth-Monash Rehabilitation Medicine Unit, Southern Medical School, Monash University, Melbourne, Victoria, Australia.
authors.forename: P W
authors.initials: PW
authors.lastname: New
authors.affiliation: 1] South Australian Spinal Cord Injury Service, Hampstead Rehabilitation Centre, Northfield, South Australia, Australia [2] Discipline of Orthopaedics and Trauma, School of Medicine, Faculty of Health Science, University of Adelaide, Adelaide, South Australia, Australia.
authors.forename: R
authors.initials: R
authors.lastname: Marshall
mesh_terms: D003625:Data Collection; D016208:Databases, Factual; D006801:Humans; D038801:International Classification of Diseases; D020407:Internet; D012107:Research Design; D012955:Societies, Medical; D013119:Spinal Cord Injuries / Q000209:etiology; D013997:Time Factors