A researcher is standing talking to a research participant, who is sitting down wearing over the head headphones with a microphone attachment ready to bank his voice

Improving quality of life today

Improving quality of life today

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 platform empowering people living with MND in Scotland to directly influence the provision of clinical care and take part in research. The platform allows us to audit the provision of MND care across the country. It also holds the Scottish MND Register. Over 95% of people with MND in Scotland have given their consent to be added to this register which allows our researchers to anonymously review the data of people living with MND in Scotland. It also allows people to tell us if they might be interested in taking part in separate research studies.

In addition to this, our social scientists are conducting 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 are also studying 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.

Making a difference

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. SpeakUnique, the Voicebank Research Project, was developed to create 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. 

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.