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People living with motor neuron disease (MND) will have more opportunities to participate in groundbreaking research, thanks to a new digital platform designed to accelerate the search for a cure for the debilitating disease.     

The innovative digital service, which has been designed by researchers from the University of 91̽�� and the UK MND Research Institute, will make it easier and quicker for large numbers of people with MND to take part in vital scientific studies aimed to advance the treatment of the disease.   

Telehealth in MND-Research (TiM-R) brings together all of the UK’s MND research studies into one place to tackle the physical barriers which currently make it difficult for people living with the degenerative disease to access and participate in research.

The developers hope it will have a significant impact on speeding up treatments which will slow down or halt the progression of MND.

Dr Liam Knox, Research Fellow and member of the 91̽�� Institute for Translational Neuroscience (SITraN) at the University of 91̽��, said: “Many people living with MND currently have to travel long distances to hospitals to take part in research studies. And we’ve heard some stories of people travelling over two hours each way to access clinical trials. 

“Our digital platform makes this process easier by giving people the choice to opt into studies and take part from home - no matter where you live in the UK. This decreases the burden of studies for people with MND, and also makes it easier for MND researchers to recruit people from a variety of backgrounds.” 

He added: “By simplifying the research process and building a strong patient community, we hope to accelerate significant advancements in MND research.

“It also highlights opportunities for collaborative clinical trials and could help pharmaceutical companies reach MND patients directly. We hope this two-way process will help to speed up finding a cure.”

The platform will enable large numbers of people with MND from across the UK to get involved in the studies, regardless of where they live. Rather than having to travel to appointments in person, the platform allows participants to self-refer to multiple studies at once and provide data remotely, giving more people the opportunity to take part in a broad range of MND research studies.

After participants receive information about research and updates on how studies are progressing through their TiM-R account. They will also be sent research questionnaires, which will allow researchers to collect information to understand what studies users may be eligible for, and provide further understanding of the condition. This is all done by messages sent to their TiM-R accounts.

Jennie Starkley, an MND patient from Bedfordshire, who has used the new platform, said: "As someone living with MND, participating in research studies can be challenging. Telehealth in MND-Research has made it so much easier for me to get involved. It is really user friendly and I can access studies from the comfort of my own home, without the need for travel or in-person appointments.  

“I think this will be an excellent inclusion tool for people who have limited mobility and have problems travelling to MND centres to get involved with the fantastic research happening across the UK. I am excited to see how this will give me the opportunity to contribute to important research and feel like I'm making a difference.”

MND researchers will benefit from the new platform by being able to find and engage with potential participants, reducing the cost and length of time of conducting studies, and being able to access standardised data within a secure database to better understand MND.  

The platform, which is hosted on the online patient portal MyPathway, is funded by LifeArc, MND Association, My Name’5 Doddie Foundation and the National Institute for Health and Care Research (NIHR). 

Professor Chris McDermott, Professor of Translational Neurology at SITraN, Honorary Consultant Neurologist at 91̽�� Teaching Hospitals and Co-Director of the UK MND Research Institute, said “Our new MND research platform has been co-designed with people living with MND, MND researchers and members of the pharmaceutical industry. As a result we have a platform that meets the needs of all stakeholders who want to find better treatments for MND as soon as possible.” 

Motor neuron disease (MND), also known as amyotrophic lateral sclerosis (ALS), is a degenerative disease that affects the motor nerves in the brain and spinal cord. One in 300 people are at risk of developing MND. Most people living with MND are in their 60s and 70s, but it can affect adults of all ages.

Few people survive beyond five years after being diagnosed, and most current treatments only modestly increase length of life. MND is a group of diseases with multiple causes, rather than a single root cause, which is part of the reason it is so difficult to treat.

As the symptoms of MND get worse, it can be difficult for research studies to recruit participants with lots of different experiences and backgrounds meaning that big research studies can take several years. There is a need to speed this process up, to be able to make a difference to people’s lives. The introduction of this new platform will have a significant impact on this.

If you are someone with MND and would like to join the research platform please follow this link:  

If you are an MND researcher and would like to find out more about how the platform can support your work, please email: tim-r@sheffield.ac.uk