MND-SMART Sub-study-1

To understand how people feel about joining the trial and what their experiences are, we have added a sub-study to MND-SMART. A sub-study is an 'add-on' to the original design and participants have the option of consenting to be part of it.

We want to know not only what peoples' expectations of the trial are, but also how these expectations may change during participation. We will collect data by asking participants and care-givers to answer a questionnaire when they join the trial, after 2 months participation and again after 6 months.

I am part of the team that designed MND-SMART Sub-Study 1. It's important to hear feedback directly from participants, and their caregivers. This will help us to understand why people choose to participate in a trial, continue to be involved, or stop participating. The feedback from the study will be used to help us make decisions about the future of the Trial, and support other researchers who are designing trials for people with MND. I am grateful to everyone who has already taken the time to complete the questionnaires on their expectations and experiences of being involved in a clinical trial.

If a participant chooses to withdraw from the trial, there is a specific questionnaire to gather information on this decision. We are also asking if people would be willing to have an interview about this with the central research team in Edinburgh.

The information we gather from this sub-study will be used to further enhance the design of MND-SMART and other clinical research studies for people with MND.

If you are joining MND-SMART soon and interested in the sub-study please ask your research team for more information. (Participation in the sub-study is a completely optional aspect of the trial and does not affect the ability to take part in MND-SMART.)