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Initial Trust investment in digital health lays the foundations for new CF clinical trial
A clinical trial will examine whether home monitoring, together with software that predicts future health outcomes can support clinical decision making for people with cystic fibrosis (CF) and non-CF bronchiectasis (NCFB). The study is led by Professor Andres Floto from Royal Papworth Hospital and the University of Cambridge.
Starting in early 2023 the trial will enroll up to 500 people with CF and people with NCFB, including people with CF in Cambridge, London, Cardiff and Edinburgh. Participants will be able to use the latest home monitoring technology and test the software predictions about their health.
It will also test new ways of monitoring the health of people with CF, with the least amount of effort for people with CF themselves. This includes a small monitor that is placed beside a patient’s bed while they sleep to detect breathing patterns.
In 2016 the Trust funded the SmartCareCF study, investigating whether it was feasible to ask people with CF to monitor their health at home. The results were successful and found that people were empowered by it, and led them to change their habits to improve their health.
The next step was to investigate whether the home monitoring data collected by people with CF could be used in real time to improve how their health is managed. In an ongoing study known as Project Breathe, funded by CF Foundation and supported by the Trust, participants are sharing their home-collected health data with clinicians. The data is used to review whether a face-to-face clinic appointment is necessary, on an appointment-by-appointment basis.
The technology used for the home monitoring was improved between SmartCareCF and Project Breathe, including the development of a home monitoring smartphone app. During the COVID-19 pandemic the app was adapted so that everyone with CF could use it, rather than only the participants in the research study. In addition, during the pandemic, planned recruitment to other centres in the Project Breathe study was accelerated.
Self-monitoring my health through Project Breathe has helped me pick up signs of exacerbations more quickly, meaning problems have been intercepted earlier,
Sammie, who has been involved throughout these CF research studies.
This has given me a better quality of life as I do not need to be admitted as an inpatient for intravenous antibiotics as often
“The clinical trial announced today is another step change in improving the lives of people with CF through home monitoring and we’re proud of the impact of earlier funding from the Trust” said Dr Lucy Allen, our Director of Research & Healthcare Data.
“Data generated from the home monitoring studies have been analysed using machine learning in our flagship UK CF Innovation Hub at the University of Cambridge. We’re delighted that Professor Floto and colleagues are now in a position to test the predictive software developed from this analysis in clinical trials.”
These studies are incredibly exciting. They have the potential to provide both immediate and long-term benefits to people living with chronic and debilitating lung conditions.
Professor Floto, Honorary Consultant at the Cambridge Centre for Lung Infection at Royal Papworth Hospital
It is a unique opportunity to empower people to take control of their own health and reduce the impact the condition has on their daily life, in turn improving their quality of care and saving time and money for the NHS.
Read more about the clinical trial and the contribution of LifeArc, NIHR and Royal Papworth Hospital to this study in this story on LifeArc's website.
We won’t stop
It's thanks to our incredible supporters that we can continue to be at the cutting edge of CF research. Making breakthroughs and discoveries that change lives for the better. Now and in the future. But we know this is just the start. Incredible progress has been made, but there is still a long way to go until everyone with CF can truly live a life unlimited. We won’t stop until we can all lead the lives we want. Until cystic fibrosis stops challenging, damaging or shortening lives. And you can be part of it.
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Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,800 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing.
Since 1964, we've supported people with cystic fibrosis to live longer, healthier lives -and we won’t stop until everyone can live without limits imposed by CF.