New digital tool gives people living with MND increased opportunities to participate in research

12 December 2024

Researchers at the University of Sheffield and the UK MND Research Institute have designed and launched a new digital platform that is set to revolutionise how people with MND can become involved in research. Telehealth in MND-Research (TiM-R) will bring together all the UK’s MND research studies into one place giving more people living with MND the opportunity to participate in research, as with TiM-R, they can do this from the comfort of their own homes.

Through the platform, large numbers of people with MND from across the UK can self-refer to multiple studies at once and provide data remotely. This opens up the opportunity of participating in studies to many more people across the UK.

Once participants have registered with TiM-R, they receive research information and updates on study progression through their Tim-R account. Research questionnaires will also be sent through their TiM-R account, allowing researchers to collect information that will help them identify studies that users may be eligible for.  

Dr Liam Knox, Research Fellow and member of the Sheffield Institute for Translational Neuroscience (SITraN) at the University of Sheffield 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.”

Jennie Starkey, who is living with MND, and who we recently interviewed as a member of our Discovery Network Advisory Board, used the platform and 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.”

Professor Chris McDermott, Professor of Translational Neurology at SITraN, Honorary Consultant Neurologist at Sheffield 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.” 

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.

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). 

Our Director of Research, Dr Madina Kara said: “As a co-funder of the MND Research Institution, My Name’5 Doddie Foundation welcomes the launch of this innovative digital platform. We want to enable people living with MND to be able to access and participate in research studies no matter where they live. The Telehealth in MND-Research (TiM-R)  platform will enable increased opportunities for participation and help accelerate our understanding of the condition and search for treatments. The development of this tool shows the power of collaboration and the importance of the MND Research Institute bringing together researchers and people affected by MND.”

If you are someone with MND and would like to join the research platform, please follow this link: https://bit.ly/TiM-R.