NNUH joins remote monitoring study for MND patients

Patients living with Motor Neurone Disease (MND) in Norfolk are set to benefit from the world’s first clinical trial to use remote monitoring technology to support ventilation breathing at home.

NNUH is the only hospital in the East of England to be taking part in the DENIM clinical trial, which is focusing on improving non-invasive ventilation (NIV) support for people living with MND.

The initiative, led by Sheffield Teaching Hospitals and funded by the National Institute for Health and Care Research (NIHR), is the first in the world to test the benefits of remote monitoring and adjusting portable ventilators for MND patients. It takes place in patients’ homes with the hope that this will reduce hospital visits.

Respiratory therapy using non-invasive ventilation is currently the most effective treatment proven to extend life and improve quality of life in MND whilst also alleviating symptoms of breathing problems. This new trial seeks to build the evidence needed to expand access to this life-changing technology for the 5,000 people living with MND across the UK.

Around 250 participants will take part in DENIM and the Norfolk and Norwich University Hospital is recruiting the first patients to take part in the enhanced monitoring part of the study.

Dr Prasanna Sankaran, Consultant Respiratory Physician, said the hospital was approached to take part in the trial as the host of the Norfolk MND Care and Research Network and as a regional centre for ventilation support for patients with MND.

“Non-invasive ventilation is one of the best treatments for MND for improving length and quality of life. By receiving enhanced remote monitoring and real-time data, we can help optimise NIV better and make sure patients are getting maximum benefits from the treatment.”

“Research shows that the first 15 days are critical for predicting the long-term success of non-invasive ventilation treatment. We believe that if people with MND receive extra monitoring and support, it will help people use NIV more effectively, which will help people live longer and feel better,” he said.

Patients with MND are referred to specialist ventilation clinic run by Dr Sankaran and Dr Kelly at the point of diagnosis, for a baseline assessment and ongoing monitoring. Whilst there is no cure for MND, the trial seeks to help patients live better and for longer.

Emma Larner, MND Respiratory Physiotherapist, who is a Principal Investigator on the study at NNUH, added: “Participants will be on the study for 12 weeks and seem keen to be involved in the research as they recognise its potential to improve MND care. The study helps people identify what is most important to them and links how NIV can help maintain the activities they value. I feel privileged to be part of this study which aims to provide holistic support for people living with MND and feel positive about how this may shape MND care for the future.”