Researcher showing man with MND in wheelchair an ipad screen

March 2021: We review how people with MND are at the heart of MND-SMART.

We often read in the press about ‘the doctors and scientists behind the clinical trial’. The article may be talking about Covid-19, MND, cancer or other medical conditions. But what is not normally talked enough about is the involvement of the people affected by the condition in these studies - how the research couldn’t take place without them and shouldn’t without their involvement at all levels of the trial.

People with MND are at the heart of MND-SMART – from the initial concept, development and launch of the study, through to participating in the trial and being part of the ongoing research advisory groups and the trial steering committee overseeing the whole project.

The idea of the trial itself was a joint vision initiated by Euan MacDonald. Euan is living with MND and is co-founder of the MND research centre behind the study. Since the launch of the Research Centre, Euan and Professor Siddharthan Chandran have been mapping out the way for the launch of a drugs trial.

Through the development of the MND-SMART, key aspects of the design were determined by people with MND. This came through their feedback to the doctors and nurses who were developing the study and who were also still seeing patients in clinics, and more formally through the trial’s Patient and Public Involvement Group.  

These key aspects include:

  • the trial being as open to as many people with MND as possible, with very few exclusion criteria.  Many previous MND trials had very narrow inclusion criteria.
  • the study drugs being given as liquids so they are as easy as possible for people to swallow
  • minimal invasive clinical measures so that taking part avoids discomfort and negatively affecting people’s quality of life
  • minimal travel for participants
  • drugs are couriered to participants so they don’t need to be collected.
  • most appointments can be conducted by video call.
  • easy to understand language being used within the trial materials

With the trial now underway, people with MND retain input on how the study is run through the Trial Steering Committee (TSC). The TSC oversees the running of the trial and has a number of responsibilities including monitoring recruitment, reviewing trial reports, and approving any changes to the study including drugs being removed or added in.

The doctors and scientists behind MND-SMART recognise that people with MND are experts in their own condition. They understand things that may be obvious to someone living with the disease may not be obvious to a researcher or scientist.

We all look forward to continuing to work together towards the same goal of finding treatments that can slow, stop and eventually reverse MND.

This article was published on: Wednesday, 24 March, 2021