Factors Impacting Trial Participation in People with MND

screenshot of publication titles and authors from Journal of Neurology

Oct 2023: Euan MacDonald Centre researchers have recently published a study that aimed to improve understanding of why people with MND choose to participate, or not participate, in clinical trials of potential new treatments.

Improving our understanding of who participates in clinical trials can help us identify people with MND who want to participate but may need additional support to get involved in a clinical trial.

There is already a lot of information on how the design of a clinical trial can affect how successful that is at getting people involved, and the likelihood of them remaining in the trial.

Co-production of MND-SMART

The Euan MacDonald Centre’s clinical drugs trial, MND-SMART, was developed with a lot of input from people living with MND. MND-SMART was designed to address many of the problems that were faced by previous trials, removing some of the barriers to participation that people with MND have experienced. This provides us with an excellent opportunity to explore other factors that may also impact upon how likely people with MND are to get involved in, and stay in, clinical trials.

Study of trial participation

This study was led by Centre-funded PhD student Emily Beswick and her supervision team Profs Suvankar Pal, Sharon Abrahams and Alan Carson from the University of Edinburgh, in conjunction with the MND-SMART trial management team. The team used questionnaires to explore whether certain factors – such as depression, anxiety, cognitive impairment and physical ability - were linked to the decision to participate in MND-SMART

120 people with MND participated in this study, and they were followed up after 12 months to establish if they participated in MND-SMART or not. The team also explored how many people who participated in MND-SMART, remained participants after 12 months.

Study findings

Of 120 study participants, 60 people (50%) joined MND-SMART, and of those, 65% remained in the trial after 12 months. We found that people with MND were highly motivated to engage with MND-SMART and tended to remain participants in the trial if they joined. Only one participant from this study chose to withdraw from the trial; the remaining individuals remained trial participants until their death.

This study identified that people who were older in age, and experienced apathy (a behavioural change that cause difficulty with motivation) were less likely to get involved in MND-SMART from the start, and less likely to remain participants if they did join. Overall, we recommend that people with MND who are older in age, and experience apathy, may need more support to participate in clinical trials if they wish to do so.

Related links

Read the scientific publication: Beswick E, et al. Factors impacting trial participation in people with motor neuron disease. J Neurol (2023). doi.org/10.1007/s00415-023-12010-8.

MND-SMART clinical trial website

This article was published on: Monday, October 09, 2023