12 December 2024 News
A new digital monitoring platform has been launched to open up access to research for people living with MND in the UK, and allow participants to take part in studies from the comfort of their own home.
Telehealth in MND-Research (TiM-R) is a new digital platform that will make it easier and quicker for large numbers of people with MND across the UK to take part in scientific studies. It is hoped this will have a significant impact on accelerating the search for a cure, by speeding up the process of research studies, and widening access to research for all people with MND.
Launched by researchers from the University of Sheffield and the UK MND Research Institute (UKMNDRI), TiM-R brings all the UK’s MND research studies into one place. The platform is hosted on MyPathway which is funded by the MND Association along with LifeArc, My Name’5 Doddie Foundation and the National Institute for Health and Care Research (NIHR).
Researchers will engage with participants remotely, reducing the cost and length of time of studies, and will also be able to access data to better understand MND.
Many people living with MND currently have to travel long distances to hospitals to take part in research studies. 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 they 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.
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 people with MND directly. We hope this two-way process will help to speed up finding a cure.
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 participate in a broad range of MND research studies.
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.
MND researchers are able to find and engage with potential participants via the platform, reducing the cost and length of time of conducting studies. It also provides access to standardised data within a secure database to better understand MND.
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.
People with MND can now join the research platform.