Digital tool helps remove barriers to motor neuron disease research
- 18 December 2024
- The University of Sheffield and the UK Motor Neuron Disease (MND) Research Institute have launched a digital platform to make it easier for people with MND to engage in clinical trials
- The platform helps remove physical barriers to taking part in research, enabling people with MND to participate more easily
- Researchers can connect with participants remotely, cutting costs and saving time while collecting standardised data to help the better understand the disease
A digital platform has been developed by University of Sheffield and the UK Motor Neuron Disease (MND) Research Institute to help people participate in clinical studies on MND.
The Telehealth in MND-Research (TiM-R) service, hosted on Sheffield Teaching Hospitals NHS Foundation Trusts’ MyPathway patient portal, brings together all UK-based MND research studies into a single platform and enables participants to engage in research remotely.
Participants can self-refer to multiple studies at once and provide data via an online portal, removing the burden of in-person travel while enabling researchers to quickly recruit diverse groups of participants.
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.”
MND is a complex group of diseases with multiple causes, making it particularly difficult to treat. As the symptoms of MND get worse, it can be difficult for researchers to recruit participants from diverse experiences and backgrounds into studies, meaning large studies can last years.
As well as making participation quicker and more accessible, TiM-R will facilitate access to standardised data that researchers can use to accelerate the search for a cure for MDN.
Knox 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.”
Sheffield Teaching Hospitals NHS Foundation Trust adopted TiM-R during the COVID-19 pandemic and was one of the participating sites for studies developing the platform.
After registering with the service, participants receive information about research and updates on how studies are progressing. They will also be sent questionnaires that enable researchers to collect information to better understand MND and what studies users may be eligible for.
Chris McDermott, professor of translational neurology at SITraN 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.”
The platform is funded by LifeArc, MND Association, My Name’5 Doddie Foundation and the National Institute for Health and Care Research.
