Understanding the impact of MND on individuals and families, and developing interventions.
This research theme focuses directly on working with people living with MND. We want to understand exactly who, when and how people are diagnosed with MND, and how the diagnosis impacts individuals and families. We also want to develop practical interventions.
To achieve that, we need to involve hundreds if not thousands of people with MND in rigorous scientific research: who gets MND, when and why they get it, and how the condition progress. Does MND strike at the same rate in Scotland as elsewhere? Does it run in families? What symptom would people with MND most like us develop an intervention for? How does the diagnosis affect people and families?
It's complex and time-consuming work, but so important to get it right.
How we do this research
The backbone of all our research involving patients is the CARE-MND platform. CARE-MND is a register of people with MND in Scotland. Over 95% of people with MND in Scotland have given their consent to be added to this register. CARE-MND is used to monitor and audit care, and to identify people who might be interested in research.
Our social scientists conduct research using questionnaires and by talking to people with MND, families, care-givers, health professionals, policy-makers and the public. The work aims to understand the relationships among these groups and the needs of families affected by MND, in order to make recommendations for care and social policy.
Neuropsychologists study how the brain functions to think, learn, remember and express emotions. These can be termed ‘cognitive functions’. There is a growing body of evidence that cognitive functions are affected in some people with MND.
My voice, my identity
Your voice is more than just a means to communicate, it is part of your identity, as unique as your fingerprint. Speak:Unique, the Voicebank Research Project, aims to generate personalised digital synthetic voices to allow people with MND to sound like themselves again. The synthetic voices can be used in communication aids that convert text entered on a keyboard or by eye movements into a computerised voice.
Case study: Speak:Unique voicebank research
Decisions, decisions...
Half of all people living with MND experience changes in thinking, language and behaviour. Understanding who is affected by these changes, and what the changes are, can make a big difference to families and carers. We have developed a screening tool to identify these changes, and are training healthcare professionals around the world how to use it.