Developing core sets for persons with spinal cord injuries based on the International Classification of Functioning, Disability and Health as a way to specify functioning.

OBJECTIVE: The objective of this paper is to outline the proposed development process for the ICF Core Sets for Spinal Cord Injury (SCI) and to invite clinical and consumer experts to actively participate in this process. ICF Core Sets are selections of categories of the International Classification of Functioning, Disability and Health (ICF) that are relevant to persons with a specific condition or in a specific setting.

METHOD: The project is a cooperation between the ICF Research Branch of the World Health Organization (WHO) Collaboration Centre of the Family of International Classifications (DIMDI, Germany), the Classification, Assessment and Terminology (CAT) team and the Disability and Rehabilitation (DAR) team at WHO, the International Spinal Cord Society (ISCoS) and International Society for Physical and Rehabilitation Medicine (ISPRM) and partner institutions across the world. The project will consist of four worldwide studies to be conducted from 2006 to 2007 with a proposed ICF Core Set Consensus Conference to be held in 2007. ICF categories relevant for SCI are to be identified by means of (I) an empirical study, (II) a systematic review of outcomes and measures used in SCI research (III) an expert survey and (IV) focus groups and semistructured interviews with persons with SCI. Consensus about items that have to be part of a Comprehensive and of a Brief ICF Core Set for SCI will be reached in a final ICF Core Set Consensus Conference. Subsequent field testing will be necessary to validate this first version of ICF Core Sets for SCI.

INVITATION FOR PARTICIPATION: The development of ICF Core Sets is an inclusive and open process. Anyone who wishes to actively participate in this process is invited to contact the project coordinator ([email protected] or https://www.icf-research-branch.org/research/spinalcord-injuries.htm). Individuals, institutions and associations can be formally associated as partners of the project.