P.073 Mapping a national Duchenne muscular dystrophy registry to the International Classification of Functioning, Disability, and Health

Abstract

Background: Duchenne muscular dystrophy (DMD) is an X-linked disease that causes progressive muscle wasting. The Canadian Neuromuscular Disease Registry (CNDR) DMD subset collects data focused on body structure and function. Our objective is to develop a broader dataset including the priorities of those living with DMD in accordance with the International Classification of Functioning, Disability, and Health (ICF) – a framework for describing disease and health functions developed by the World Health Organization. Methods: Clinically relevant ICF categories for DMD were identified and reviewed by two independent committees including two patients and six parent representatives. The Delphi approach was used to narrow ICF categories to a core set representative of DMD, which will be mapped to the CNDR-DMD subset. Results: With full result expected by the conference, the mapping of the ICF to the CNDR-DMD subset will identify data collection priorities in the four domains of functioning and disability: body functions and structures, activities at the level of the individual, participation in all areas of life, and environmental factors. Conclusions: The ICF can be used to identify data collection priorities. Broadening the CNDR-DMD subset will foster future research to include outcome measures important to patients and families affected by DMD.