To ISCoS members, the readership of Spinal Cord and interested stakeholders:
Global Mapping of Spinal Cord Injury (SCI) Epidemiology: Towards a Living Data Repository (LDR)
Colleagues and I have agreed to annually update an epidemiological database regarding the causes, prevalence, incidence and survival of people with SCI as an initiative of the Prevention committee of ISCoS. For use in injury prevention, this needs to be a Living Data Respository (LDR) with information to allow valid local and international comparisons to be made. To do this WE NEED YOUR HELP.
This data is presented within the format of a Map of Global Epidemiological trends which aims to present information in an intuitive manner of analytical utility to clinicians, makers of policy and to assist in providing traction for advocates of prevention.
The foundation document outlining the research methodology of this project is available through the ISCoS journal Spinal Cord – http://www.nature.com/sc and the latest global TSCI data (2011) are available at the column on the right of this page.
The LDR project stratifies global data into quality zones and all information will be grouped and presented within this reference frame to assist interpretation. The resultant map of information quality shows insufficient data for incidence and prevalence in many major population regions.
To assist us in establishing a Living Data Repository which fills in the SCI global gaps, we request information, if available, in published articles/reports or from unpublished data sources, for example:
- SCI incidence and/or prevalence data
- Neurological level of injury data
- Aetiological (causes of) SCI data
- Survival data
If you know of other groups in your country or region who may also be able to contribute to this data repository, please send us their names and contact details and we will contact them. All contributions of data published or unpublished will be acknowledged by appropriate referencing within the online document. If you would like to collect prospective SCI epidemiological data, our subgroup has developed some tools which you may find useful (e.g. International SCI case registration software and International Classification of External Causes of Injury (ICECI) training/coding software http://www.iscos.org.uk/international-sci-data-sets.
Yours with thanks in advance!
Bonne Lee and Raymond Cripps – firstname.lastname@example.org
ISCoS International SCI Standards and Data Sets Subgroup