Print This PostMotor Neuron Disease (MND) is a fatal, progressive neurodegenerative disease that has proven difficult to study and even more challenging to treat. Currently, there are no cures. The only available drug, Riluzole, offers a modest increase of 1-2 months in survival time. The complexity of MND, its rapid progression, and the variability in symptoms among patients make it a tough nut to crack in the world of medical research.
Biomarkers, measurable indicators of biological conditions, are crucial in studying diseases. They help us understand disease progression, evaluate the effectiveness of treatments, and even predict outcomes. However, traditional biomarkers have fallen short in MND research due to the disease’s complexity and the invasive nature of obtaining some of these biomarkers.
In recent years, there has been a boom in the development of digital health and remote monitoring technologies. These offer potential new ways of gathering patient health data in real-time, non-invasively, and within the comfort of an individual’s own home. These new technologies have the potential to provide an unprecedented amount of longitudinal information from non-laboratory-based settings, giving us new insights into diseases that were simply not available before. Using such technologies, there is the potential to collect data for research purposes and to predict, prevent, or more rapidly respond to health events that occur within the home.
For MND research, the creation of digital biomarkers could revolutionize our understanding of the disease and how we conduct clinical trials. Continuous, real-time data could be recorded to help determine whether a novel therapy is effective in new outcome measures capturing respiratory rates and fasciculatory activity (muscle twitches), both of which are related to muscle weakening. Using continuous digital biomarkers would not only provide more nuanced information but would also vastly improve the current gold standard of using subjective functional rating questionnaires for monitoring MND. Moreover, continuous remote monitoring could improve the quality of life by providing timely care, such as making evidence-based recommendations for when to begin ventilation or make adjustments within the home to improve the quality of life for patients and carers.
What I’m proposing here is not just a pipe dream. Work has already begun at many research institutions to integrate digital health technologies into the creation of digital biomarkers for MND. At the UK Dementia Research Institute’s (UKDRI) Care Research and Technology Centre, the multidisciplinary team has already created a home monitoring platform called Minder. It uses Internet-of-Things (IoT) sensors and internet-enabled medical devices to remotely monitor patient health. The system is already installed in over 100 homes of people living with dementia and is demonstrating its utility in predicting agitation, urinary tract infections, and other adverse health events in people who may not be aware of these disturbances or may be unable to communicate these problems.
In a recent cross-centre collaboration between UKDRI centres at King’s College London and Imperial College London, we are now bringing the Minder home monitoring system to people living with MND. King’s brings its expertise in MND, while Imperial contributes its technical and clinical knowledge in developing and deploying such a system. The ongoing study is already in the homes of patients with MND and is showing promising results for remotely monitoring physiological changes. We hope this will provide new valuable digital biomarkers of disease progression.
However, remote health monitoring is not without its challenges. It’s difficult to accurately label events occurring within the home and understand which aspects of recorded behaviour reflect physiological changes in the patient. To address this, we have started developing digital biomarkers in an artificial apartment laboratory called the Living Lab.
The Living Lab is a sensor-filled, one-bedroom working apartment located in the Care Research and Technology Centre. Here, people with a range of neurodegenerative disorders can complete real-world tasks, such as making tea and toast in the kitchen. These activities can be observed and researched with state-of-the-art technologies in a more controlled setting than a home environment, allowing us to refine and develop new digital biomarkers. These can then be deployed into the Minder monitoring system and into patients’ homes.
The potential of digital biomarkers in MND research is vast. They could provide a more nuanced understanding of the disease, pave the way for more effective treatments, and ultimately, improve the quality of life for people living with MND. As we continue to innovate and refine these technologies, we move closer to a future where MND is no longer an insurmountable challenge but a manageable condition. The age of digital health is just beginning.
Dr Mark Crook-Rumsey
Author
Dr Mark Crook-Rumsey is a Postdoctoral Research Associate at the UK Dementia Research Institute. His role is to bridge the gap between the two centres and combine the technology developed at Imperial College London’s Care Research and Technology Centre with the clinical expertise in motor neurone disease at King’s College London. His current focus being digital biomarkers for Motor Neuron Disease (MND).
