Healthcare (Commonwealth Union) – Individuals affected by motor neuron disease (MND) will gain greater opportunities to engage in cutting-edge research, thanks to a newly developed digital platform aimed at accelerating the quest for a cure for this debilitating condition.
Created by experts from the University of Sheffield and the UK MND Research Institute, this innovative platform is designed to streamline and simplify participation in crucial scientific studies, enabling more individuals with MND to contribute to advancements in treatment.
The Telehealth in MND-Research (TiM-R) initiative consolidates all MND research efforts across the UK into a single hub, addressing physical barriers that often prevent those living with this progressive disease from taking part in research.
Developers anticipate the platform will play a pivotal role in expediting the development of treatments that can slow or stop the progression of MND.
Dr. Liam Knox, a Research Fellow and member of the Sheffield Institute for Translational Neuroscience (SITraN) at the University of Sheffield, stated that at present, many individuals with MND have to undertake lengthy journeys to hospitals to participate in research studies. They have heard of cases where people travel over two hours each way to access clinical trials.
Dr. Knox further indicated that their digital platform simplifies this process by enabling individuals to opt into studies and participate from the comfort of their homes, regardless of their location in the UK. This reduces the strain on people with MND while also making it easier for researchers to engage with participants from diverse backgrounds.”
He further indicated that by streamlining the research process and fostering a robust patient community, they aim to drive meaningful progress in MND research.
Dr. Knox also pointed out that this approach also opens doors to collaborative clinical trials and makes it possible for pharmaceutical companies to connect directly with MND patients. They hope this reciprocal model will accelerate the search for a cure.
The platform offers individuals with MND across the UK the chance to participate in studies regardless of their location. Instead of attending in-person appointments, participants can use the platform to self-enroll in multiple studies simultaneously and share data remotely, making it easier for more people to contribute to diverse MND research efforts.
Once registered with TiM-R, participants gain access to research updates and study progress through their TiM-R account. They receive research questionnaires, enabling researchers to gather information about their eligibility for specific studies and gain deeper insights into the condition. All communication, including questionnaires and updates, is delivered directly to their TiM-R accounts.
Jennie Starkley, an MND patient from Bedfordshire, who has used the new platform, says “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.”
The new platform offers significant advantages to MND researchers, enabling them to identify and connect with potential participants more efficiently, reduce the costs and duration of studies, and access standardized data within a secure database to enhance their understanding of MND.
Hosted on the MyPathway online patient portal, the platform is supported by funding from LifeArc, the MND Association, My Name’5 Doddie Foundation, and the National Institute for Health and Care Research (NIHR).