Digital platform expands participation in motor neuron disease research

People living with motor neuron disease (MND) across the UK now have greater opportunities to contribute to research through a new digital platform aimed at expediting the search for treatments.

The platform, called Telehealth in MND-Research (TiM-R), has been developed by researchers from the University of Sheffield and the UK MND Research Institute. It brings together all MND research studies in one location, making it easier for people with MND to participate from their homes.

TiM-R addresses physical barriers to research participation by allowing patients to self-refer to multiple studies and provide data remotely. This eliminates the need for travel, which has previously been a significant obstacle for those with the degenerative condition.

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

By simplifying the process, the platform aims to build a strong patient community and accelerate research into treatments that slow or halt MND progression. Dr Knox added, “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.”

Once registered, participants receive information and updates about research studies through their TiM-R accounts. They complete research questionnaires remotely, allowing researchers to assess eligibility and collect valuable data to further understand the condition.

MND patient Jennie Starkley from Bedfordshire shared her experience using TiM-R, stating, “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.”

She added, “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.”

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

Professor Chris McDermott, 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.”

MND, also known as amyotrophic lateral sclerosis (ALS), is a degenerative disease affecting motor nerves in the brain and spinal cord. It affects one in 300 people, with most cases diagnosed in individuals in their 60s and 70s. Current treatments offer limited extension of life expectancy, and the disease’s complex nature complicates efforts to find a cure.

The platform’s introduction is expected to reduce the time and costs associated with conducting research and improve access to diverse participants. Researchers believe this innovation will play a key role in driving significant progress in the field.