Research on People with MS: Definitions, Data Sources and Methodologies

Abstract

This chapter considers the principal challenges facing research on people with Multiple Sclerosis (PwMS) and in so doing details some of the inadequacies of the research that has already been carried out. Most of these issues stem from three main sources: the nature of the disease itself including its definition and diagnosis, the available information sources and the ways in which they have been used to answer research questions, that is their methodologies. It then proceeds to consider the four main approaches to research adopted so far to provide the descriptive evidence and insight into the lives of PwMS employed in this book: regional counts of PwMS, the growth of registers of PwMS, mass surveying of PwMS and detailed small group qualitative analyses.