Future work
cognitive and behavioural symptoms
SECONDARY
A key future direction in this area of research is increasing the frequency that person-specific factors and trial engagement are explored. Incorporating studies with a concept similar to the current study, either alongside trials, as studies-within-a-trial or sub-studies, can enable trialists to evaluate the characteristics of their own participants. Data on demographics, functional ability and clinical characteristics are routinely collected throughout an individuals’ trial journey, and secondary outcome measures focusing on neuropsychiatric, cognitive and behavioural symptoms are becoming more prevalent in trial design [Expanding on the variables explored in the current study may be a useful direction for future research, considering how broader social and demographic characteristics of prospective participants are associated with the decision to participate in a clinical trial. Socio-economic status, preferred language, marital status and education are potential areas to consider as impactful on trial participation. Genetic status is also a key variable to consider including in future research in this area, where genetic data are available, as awareness of genetic status may have an impact on individual’s decision to engage with a clinical trial.For future research in this area it may be beneficial to explore how these person-specific factors affecting trial engagement decisions interact with trial design factors. MND–SMART uses repurposed drugs with known safety profiles, minimally invasive outcome measures and oral IMP administration. Exploring how person-specific factors affect the decision to enter into other trials which may have a higher participant burden, will be a key future direction to understand the decision process.Future studies may also seek to overcome the sampling bias occurring in this study, which involved a cohort who self-selected as participants in a non-interventional study and were already more engaged in research than the wider MND population in Scotland. This may be done through exploring the characteristics of the sub-group who opted not to engage in any research participation, using data collected in routine clinical care, where people have provided permission for this information to be used in research, without a need to rely on active participation.