This study hopes to improve our understanding of how people with a diagnosis of motor neuron disease (MND) are affected by ‘non-motor symptoms’. As well as changes to how the body moves and physical problems, for some people MND can also affect how they think or behave, and they may experience pain, tiredness, sleep issues and mental health symptoms.
Our aim is to find out how often people with MND experience any of these problems, how often they do and what kind of an impact these issues have on their life.
We are inviting people with MND to complete a short questionnaire about their physical symptoms (the Revised ALS-Functional Rating Scale), and a second questionnaire designed specifically for this study. This questionnaire will ask about symptoms you experience, how you think that they should be assessed and how important they are to you for your clinical team and researchers to consider.
The findings from this study will be used to improve the design of future clinical trials, and to support researchers and clinicians in understanding what symptoms matter to people with MND.
