Key findings
reduced retention, apathy
RECRUITMENT
As in our study, previous findings have repeatedly shown that people with MND are highly motivated to engage with research [This suggests that prospective research, involving both current and potential participants, is crucial. Focusing on the identification and removal of barriers to participation and retention must remain a priority across MND.This study indicated that age was a significant predictor for the likelihood of recruitment and retention to MND–SMART, with older individuals less likely to participate, and remain participating, in the trial. Reduced likelihood of participation from older age groups has also been identified as a concern in previous research [Increased severity of apathy, as indicated by caregiver responses to the b-DAS, was associated with reduced likelihood of retention to MND–SMART. The availability of literature exploring how apathy may impact research engagement was limited, with a focus on defining and measuring apathy [Region of onset was the only clinical characteristic found to be associated with reduced retention rate to MND–SMART; individuals with a Mixed onset least likely to be retained, followed by those with Bulbar, then Upper and Lower Limb. Lower retention rates for people with Mixed and Bulbar onset was as expected, as these regions of onset are repeatedly linked to speech or swallow problems, and more rapid progression and worse prognosis than limb onset [The finding that ALSFRS(R) scores were not significantly linked to trial engagement is inconsistent with previous study findings which showed better functionality at randomisation was a predictor of remaining a trial participant [