Article

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.

Langue : ANGLAIS