Global maps of non-traumatic spinal cord injury epidemiology: towards a living data repository

Study design: Literature review. Objectives: Globally map non-traumatic spinal cord injury (NTSCI) incidence, prevalence, survival, level of injury and aetiology. Propose a research framework for NTSCI prevention and launch a repository of NTSCI data. Setting: Initiative of the International Spinal Cord Society Prevention Committee. Methods: Literature search of Medline and Embase (1959-June 2011). Relevant articles in any language regarding adults with NTSCI were included. Stratification of information about incidence and prevalence into green/yellow/orange/red data quality 'zones' and comparisons between World Health Organisation (WHO) regions and countries. Results: Three hundred and seventy-seven abstracts reviewed-45 of these from 24 countries in 12 of the 21 WHO global regions had relevant information. Only one publication had survival data. Prevalence data for NTSCI existed for only two countries, India (prevalence of 2 310/million population, Kashmir region) and Canada (prevalence of 1 120/million population). The incidence rates for WHO regions were: Asia Pacific, high income 20/million population/year; Australasia (26/million population/year); Western Europe median of 6/million population/year; North America, high income median 76/million population/year (based on poor-quality studies); and Oceania 9/million population/year. Developed countries tended to have a higher proportion of cases with degenerative conditions and tumours. Developing countries, in comparison, tended to have a higher proportion of infections, particularly tuberculosis and HIV, although a number also reported tumours as a major cause. Conclusions: Insufficient survival, prevalence and incidence data are a predominant finding of this review. The piecemeal approach to epidemiological reporting of NTSCI, particularly failing to include sound regional population denominators, has exhausted its utility. Minimum data collection standards are required.