Research and the associations: an era for partnership

Abstract

A growing volume of research is being conducted into amyotrophic lateral sclerosis/motor neurone disease, driven in part by a perceived rise in incidence of the disease. This increase in research coincides with the emergence of the voluntary associations. Originally critical of the lack of research, the associations have started to raise funds for a variety of studies. Many of these require the active involvement of patients, and, given the relatively small numbers, there are dangers of the associations, research and good clinical care becoming too closely interdependent. There are also dangers of pharmaceutical companies and the voluntary associations being put under pressure to produce results extremely quickly. As well as having a valuable part to play in research, the voluntary associations are also involved in patient education, and in trying to spread the word on which available options are the subject of 'informed choice'.