Going through the transplant process is a challenging time for people with CF and their loved ones, and the Trust is working to find ways to improve the lung transplant journey by listening to the experiences of people with CF, from first thoughts to deciding whether or not to join the transplant list.
The survey is part of a ground-breaking research project undertaken in partnership with Johns Hopkins University and the Royal Brompton Hospital, and will be studied together with the results of a similar survey for CF clinicians asking about their approach to the referral process.
Predicting the future through machine learning
To support people with CF to work out the best time to be referred for lung transplant, the Trust is also collaborating with the Alan Turing Institute on a research project to predict the future health of people with the condition. This new method has been used to find an accurate 'decision-making policy' for when an individual with CF should be referred for a lung transplant.
Nick Medhurst, Head of Policy and Public Affairs at the Trust, said: “The aim of these studies is to empower people with CF and their families through the transplant process to achieve better clinical outcomes.
“The projects will help us get the best possible picture of what constitutes best practice in lung transplant referral and care.”
Please complete the survey to tell us about your experience.