Our researchers have launched a new digital platform to improve access to research for people living with MND and accelerate the search for a cure.
Our researchers, based at the University of Sheffield, have launched a new digital platform to enhance research participation for people living with MND.
Telehealth in MND-Research (TiM-R) aims to overcome physical barriers for people living with the disease by improving access to research and speeding up the search for a cure.
MND is an increasingly debilitating disease, which makes it difficult for research studies to recruit a diverse range of participants needed for high-quality research.
More information is needed about people living with MND, and this platform will provide healthcare professionals with more information about their conditions between appointments, offering more responsive and better-quality care.
Removing barriers to research
Researchers at Sheffield developed the platform so that it does not follow the traditional recruitment pathways, enabling people using the app to self-refer to multiple studies simultaneously and submit data remotely.
It also allows people to hear about new research opportunities and participate in new studies, regardless of their location in the UK.
The platform keeps users updated on the progress of studies and notifies them of results when they become available.
Dr Liam Knox, Research Fellow and member of the Neuroscience Institute at the University of Sheffield, explained: “It’s common for people with MND to 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 to access clinical trials. Our digital platform makes this process easier by allowing people to opt into studies and take part from home – no matter where they live in the UK. This decreases the burden of studies for people with MND and makes it easier for MND researchers to recruit people from various backgrounds.”.
Better understanding MND
The platform is a collaboration project between Sheffield researchers and the MND Research Institute. It could reduce the cost and time it takes to conduct studies.
The system also helps MND researchers find and engage with potential participants and access data within a secure database to understand MND better.
Few people with MND live beyond five years after being diagnosed, and we urgently need new treatments for the disease. Platforms such as TiM-R could improve access to research and streamline the process.
Professor Chris McDermott, our co-director of the UK MND Research Institute, added: “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.”
If you have MND and would like to join the research platform, read more here.
The work is funded by is funded by LifeArc, MND Association, My Name’5 Doddie Foundation and the National Institute for Health and Care Research (NIHR).
You can read about our other blogs and news stories here or read about our research here.
