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Contact the study team using the details below to take part. If there are no contact details below please ask your doctor in the first instance.
Dr
zDarius
kWoznia
dariusz.wozniak@nhs.net
Victoria
Stoneman
victoria.stoneman@nhs.net
Systemic atrophies primarily affecting the central nervous system
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Non-invasive ventilation (NIV) is commonly offered to people with MND who have breathing difficulties. It improves their quality of life and can prolong life by 6 months or more. It is initially used at night and typically set up during a hospital admission. By the time that they develop respiratory failure and need to start NIV, however, most patients require wheelchairs or have other significant health problems. Repeated travel to hospitals is increasingly difficult with increasing disability. It is possible to start and monitor NIV treatment at home, which may be more convenient for selected patients, but starting NIV is a quite complex process. It is not known if home treatment is as safe and effective as hospital-based treatment.
To answer this, we will recruit 60 patients with MND who have indications for NIV. They will be randomly allocated to a home-based treatment (home NIV set up plus home visits) or hospital-based care (inpatient NIV set up plus outpatient NIV monitoring) and followed up at 1, 4 and 7 months. Alongside measures of treatment effectiveness, we will assess patient and carer preferences, their experience, quality of life, and cost-effectiveness. We hope that the knowledge generated in this study will help us to transform the way NIV treatment is delivered for people with MND to improve their experience and quality of life.
Start dates may differ between countries and research sites. The research team are responsible for keeping the information up-to-date.
The recruitment start and end dates are as follows:
Type: Active Monitoring;
You can take part if:
You may not be able to take part if:
Exclusion criteria for people with MND (RCT part) • Cognitive impairment precluding understanding of the study protocol and valid consent • Severe co-morbidities (i.e. decompensated heart failure, severe COPD, morbid obesity) causing or contributing to respiratory failure • Immediate need to start NIV (< 24hrs) and/or acute illness requiring inpatient treatment e.g. intravenous antibiotics for pneumonia • Lack of a sufficient social/professional network to support NIV application at home • Not wishing to accept home NIV Exclusion criteria for carers and patient with MND taking part in the qualitative part of the study: • Unable to understand and communicate in English • Unable to give informed consent
Below are the locations for where you can take part in the trial. Please note that not all sites may be open.
The study is sponsored by ROYAL PAPWORTH HOSPITAL NHS FOUNDATION TRUST and funded by MOTOR NEURONE DISEASE ASSOCIATION .
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Read full details
for Trial ID: CPMS 60063
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