Remote Spirometry in ALS/MND
Research type
Research Study
Full title
Remote Monitoring of Respiratory Symptoms and Motor Function in People with ALS/MND
IRAS ID
296348
Contact name
Christopher J McDermott
Contact email
Sponsor organisation
Sheffield Teaching Hospitals NHS Foundation Trust
Duration of Study in the UK
1 years, 6 months, 1 days
Research summary
Motor neurone disease (MND) is a neurological condition with no cure and a shortened life expectancy. As the disease progresses, patients experience weakness of limb muscles, difficulties with chewing and swallowing and most critically weakness of their breathing muscles. As such, the medical intervention with the longest extension in survival and improved quality of life is non-invasive ventilation (NIV) which helps with breathing. Therefore, identifying problems with breathing early and efficiently is crucial for effective management and improving prognosis.
Remote monitoring of disease progress may be a useful way of detecting early deterioration in respiratory functioning, leading to more timely consultations about starting NIV and helping patients be more informed when making a decision about commencing NIV.
We have designed a multi-faceted study to go alongside the clinical service currently offered to people with MND (pwMND) to track respiratory and motor function with the aim of identifying respiratory decline earlier. We will send eligible PwMND under Sheffield Teaching Hospitals (STH) home breathing monitors and ask them to take fortnightly readings to track their respiratory function and self-report their respiratory and sleep symptoms. A smaller group of patients will also have their physical activity remotely monitored to assess any decline in motor function.
The patients will continue to have their regular three monthly appointments with the respiratory physiotherapists but the clinicians will have more data on which to act and potentially have already identified a trend in the clinical condition. Throughout the study, interviews with patients, their families and staff will also help assess the acceptability of the study interventions and their impact on patients’ and clinical decision making. The primary outcome of the study look at acceptability and feasibility of remote monitoring to patients and the usefulness of the data collected in clinical decision making.
REC name
Wales REC 7
REC reference
21/WA/0277
Date of REC Opinion
8 Sep 2021
REC opinion
Further Information Favourable Opinion