DENIM: Delivering Effective Non-Invasive ventilation in Motor neuron disease using intensive remote support

Motor neuron disease (MND) is an incurable neurodegenerative disorder that causes progressive muscle weakness that can severely affect mobility, swallowing, speech, cognition and breathing. People living with motor neuron disease (plwMND) are offered non-invasive ventilation (NIV) to help them with difficulties in breathing. Used effectively, NIV can support people to live better, for longer. However, it can be challenging to use NIV at home, meaning that not everyone experiences the full benefits of the technology. 

Key Aims:

This project aims to determine if intensive support from staff during the first 12 weeks of using NIV, informed by remote monitoring data, can help plwMND use their NIV for longer and more effectively at home, without the need for additional hospital visits. The clinical trial is involving 12 UK NHS Trusts and over 250 patients will be recruited.

Impact:

This study will inform future implementation guidance to optimise care for plwMND using NIV at home. This will not only improve patient lives but will also enhance the skills and knowledge of healthcare professionals to deliver this support to plwMND at home. The project aligns closely with the NHS 10 Year Health Plan in bringing technologies from the hospital to the community, in order to help patients live better lives for longer.

Project Team and Funding:

he project is led by Dr Esther Hobson who is a Senior Clinical Lecturer at the University of Sheffield and is sponsored by Sheffield Teaching Hospitals NHS Foundation Trust. Dr Dan Hind of the NIHR HRC in Long Term Conditions (Devices for Dignity) is the lead implementation scientist for the study. Other collaborators include Guys and St Thomas' NHS Trust, Sheffield Institute for Translational Neuroscience (SITRAN), the University of Leeds, Newcastle Upon Tyne Hospitals NHS Foundation Trust, the London School of Hygiene & Tropical Medicine and the Better Outcomes in MND (BOND) Patient and Public Involvement (PPI) group.

The project started on the 1st September 2024 until the 31st January 2028. The project is funded by the NIHR Health and Social Care Delivery Research (HSDR) programme (ref158715).The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

Learn More:

Worlds-first trial harnesses remote technology to help motor neurone disease patients live longer

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