A world-first clinical trial supporting people living with motor neuron disease (MND) to access breathing support from home using remote monitoring tech is being launched by Sheffield Teaching Hospitals NHS Foundation Trust in partnership with the University of Sheffield.
MND is an incurable and rapidly progressing muscle-wasting illness – with breathing difficulties common as the muscles that help the lung inhale and exhale weaken. Many people with MND will rely on ventilation support. This type of ventilation needs regular monitoring and timely intervention to prevent complications and maintain a better quality of life. However, over half of people with MND struggle or are unable to use portable ventilators for breathing support for long enough to gain the full benefits.
The £1.7m National Institute for Health and Care Research (NIHR) DENIM trial is testing the benefits of remotely monitoring and adjusting portable ventilators for breathing support in MND patients, across 12 areas of England.
Using tech to bring care closer to patients' home
Researchers will harness advances in technology which now allows clinicians to remotely monitor breathing rate and other vital health data so that adjustments to therapy can be made quickly from the comfort of patients’ homes.
Around 250 patients will be recruited into the trial, with half set to receive the remote monitoring technology. If successful, it could transform care for thousands of people living with MND across the UK, reduce the need to travel to hospital and help them live better for longer.
The trial launch is being announced alongside a wider government initiative as part of the NHS 10 Year Health Plan to bring health technologies closer to patients, ensuring more convenient care from the comfort of people’s own homes.
Dr Esther Hobson, Honorary Consultant Neurologist at Sheffield Teaching Hospitals NHS Foundation Trust and Senior Lecturer in Neurology at the University of Sheffield, who is leading the trial, said:
“We’re really excited to be leading on this UK-wide study looking at how we can use remote monitoring technology to bring care to people living with MND closer to home. Non-invasive ventilation is such an important treatment as it is the only treatment that can help people with MND live longer and feel better.”
Jessica Lee, Director of Research at the My Name'5 Doddie Foundation, said:
"For people living with motor neuron disease, attending hospital appointments can become increasingly difficult as the condition progresses. We therefore warmly welcome this world-first trial in remote monitoring, which has the potential to ease the burden of travel, make care more accessible, and improve quality of life for those affected.”
Building evidence to expand life-changing technology
Currently very few UK NHS Trusts use remote monitoring technology for MND patients due to limited resources and expertise, meaning support for patients to effectively use portable ventilators and masks for breathing support at home remains largely absent from standard NHS care.
The trial is being managed by the University of Sheffield’s Clinical Research Trials Unit, with support from the Better Outcomes in MND team, a network of researchers, healthcare professionals and those living with MND all of whom are passionate about improving the care for people living with MND and their families. The trial is also supported by and affiliated with the NIHR Sheffield Biomedical Research Centre.
Rebecca Playle, whose mother died of MND less than a year after diagnosis, said she was glad to help design the trial as part of the Patient, Public and Involvement panel: “We hope the DENIM trial will help alleviate symptoms in people with MND and provide families with the extra support they need.”
MND patients can suffer with symptoms such as difficulty with movement, speaking, swallowing, and breathing, with the trial seeking to improve quality of life.
ENDS
The trial is open to patients with a diagnosis of MND, who are starting to use NIV, at the 12 UK NHS Trusts taking part in the study.
- Barts Health NHS Trust
- Guy's and St Thomas' NHS Foundation Trust
- Leeds Teaching Hospitals NHS Trust
- Manchester University Hospitals NHS Foundation Trust
- Newcastle Hospitals NHS Foundation Trust
- Norfolk and Norwich NHS Foundation Trust
- Nottingham University Hospitals NHS Trust
- Oxford University Hospitals NHS Foundation Trust
- St George’s University Hospitals NHS Foundation Trust
- Sheffield Teaching Hospitals NHS Foundation Trust
- University Hospitals of Leicester NHS Trust
- University Hospitals of North Midlands
Patients recruited into the trial will be actively involved for a period of 12 weeks. Sites taking part in the trial will be recruiting patients until 30th April 2027, with trial results expected by the end of January 2028.