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The Anne Rowling Clinic is pleased to share an update from the Digital App for Speech & Health Monitoring (DASH) project team on their pilot study, "Everyday Devices for Monitoring MND". This study aims to improve the care and management of motor neuron disease (MND) by exploring the use of everyday digital devices to monitor changes in movement and everyday function over time. It is important to be able to measure how motor neuron disease (MND) changes over time. This will help healthcare teams to better understand how the disease is progressing, and plan care.
At the moment, the main tool used to measure changes in MND is a questionnaire called the ALS Functional Rating Scale (ALSFRS-R). This questionnaire asks about everyday activities such as speaking, swallowing, walking, using your hands, and breathing. While it is widely used, it relies on people describing their own abilities and clinical assessments. This means it only provides a snapshot of how someone is doing at a particular moment in time.
New digital technologies could make it possible to monitor MND more regularly and from home. However, challenges remain. Some approaches ask people to complete short tasks, providing objective information about movement. However, these tests are often carried out at specific time points and may not reflect how people function in everyday life.
Other approaches use wearable devices to monitor daily activity. These can capture what people do in the real world but often cannot tell us how well someone is performing specific everyday tasks.
Our long–term aim is to develop a simple and reliable way of monitoring people living with MND remotely using technology that many people already own and use.
Our progress
We have launched a pilot, which is now recruiting participants through the Anne Rowling Clinic. The study will explore whether everyday digital devices can provide useful information about changes in movement and everyday function.
The pilot will compare these digital measurements with standard clinical assessments like the ALSFRS-R questionnaire, to find out every day digital devices can provide a more accurate picture of how MND affects movement and daily function, particularly hand and arm movements, and walking. It is hoped that by using everyday digital devices that the we can reduce the burden on people living with MND by making it easier to monitor changes over time remotely.
Our long-term goal is to develop a clinically meaningful remote monitoring framework for MND. By using everyday digital technologies, we aim to provide objective, real-time measures of disease progression while reducing the burden of frequent clinic visits for people living with MND.
The pilot is now open for recruitment via NeuroCARE at the Anne Rowling Clinic with the first participants completing assessments.
Relevant links
Learn more about the DASH research project.
Visit the NeuroCARE project page for more information and to sign-up: NeuroCARE project
Discover how you can support our research: Support Us