Holistic Assessment of Non-Motor Symptoms for People with Motor Neuron Disease (NMS-MND)
A questionnaire study to investigate how people with MND are affected by 'non-motor symptoms' - those not related to movement.
Condition(s)
- Motor neuron disease
Project type
- Understanding the condition
About the project
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.
Funder(s)
Publication(s)
Status
Contact
Eligibility criteria
People with MND in Scotland are invited to contact Emily Beswick to receive a postal questionnaire or a link to complete online.