DENIM
Research type
Research Study
Full title
Delivering Effective Non-Invasive Ventilation in Motor Neuron Disease
IRAS ID
334849
Contact name
Esther Hobson
Contact email
Sponsor organisation
Sheffield Teaching Hospitals NHS Foundation Trust
Duration of Study in the UK
2 years, 4 months, 31 days
Research summary
Motor neuron disease (MND) affects 1 in 300 people. There is no known cure. Most people die due to weakness of the muscles that control breathing. Non-invasive ventilation (NIV) is the only treatment shown to help people with MND live longer, feel better and enjoy life more. NIV involves wearing a mask over the face to support breathing and many people find it hard to use. More than half of people are not getting the full benefits, either because they are unable to use it for long enough or because it does not work well. People with MND who are starting NIV will take part in the DENIM study. Each person will be involved for the first 12 weeks after starting NIV. All patients will receive the usual care from their healthcare team, but half will also receive additional support. The healthcare team will get extra training to help them understand MND and NIV better. In addition, extra information will be sent automatically from the NIV machine in the patient’s home (called telemonitoring). This tells staff if there are problems with the NIV without patients having to remember. We want to find out if people using the intensive home support service are able to use their NIV for longer periods and get more benefit. We will also see if people live longer and feel better. We will make it as easy as possible to take part because people with MND are very unwell and staff are busy. We will collect most information from the NIV machines automatically. We will also use short questionnaires for patients twice and interview some patients and their carers. Staff will complete questionnaires, interviews and observations to learn if the programme works and consider how it can be rolled out widely in the NHS.
REC name
Yorkshire & The Humber - Leeds East Research Ethics Committee
REC reference
25/YH/0019
Date of REC Opinion
24 Feb 2025
REC opinion
Further Information Favourable Opinion