Strengths of the study
This is the first prospective study exploring the characteristic of participants, and non-participants, in an MND trial. This study was conducted in parallel with the launch of a national multi-arm, multi-stage trial for repurposed candidate drugs, MND–SMART. The timeline was a key strength of this study, as we were able to evaluate participant-specific factors and attitudes as individuals were to be imminently faced with the possibility of trial participation.Validated questionnaires on neuropsychiatric symptoms, behavioural change and quality of life were combined with clinical, demographic, cognitive and physical functioning data to provide an extensive list of participant-specific variables. In addition, attitudes towards participation and understanding of trial design, were explored in a questionnaire designed with the input of people with MND, specifically for this study.