We are designing a research study which aims to understand the factors that are responsible for maintaining health in cystic fibrosis (CF) with a particular focus on the first two decades of life. We would like to invite you to contribute to the planning of the study and to give us feedback on how we can ensure that the results are most beneficial for people with CF and their CF teams.
As you will know from attending clinic, it is common for your CF team to regularly record a number of measurements (including lung function, height and weight), and monitor how these change over time. However, in many young people with CF these measurements remain normal for many years, and we currently don’t have a good way of knowing how someone is doing or how well they are likely to remain in the future. In this study we want to better understand both what keeps people with CF healthy, and also what features point towards a period of ill health. We are planning to use anonymous UK CF Registry data (from each patient’s annual review) to investigate what factors are similar in people who stay well, compared to those that get more unwell. In addition, patients may have important insight into what factors are important for staying healthy.
We propose to use new ways of looking at these data that have never been done before in CF. At the end of the study, we hope to have a tool which patients and their CF team can use to monitor health (for example a score or value which relates to how likely someone is to remain well). This could help shape the amount or type of treatments that patients need in a more appropriate way.
We would like to ask you to help us identify what factors you think we should include in our study, and what you would like the tool or score to look like in the end. Importantly we are not asking you to participate in the study itself, but rather contribute your ideas and suggestions to make our study more relevant to patients.
If you are interested in helping to shape the design of this study, we would be delighted to hear from you. We are keen to talk to people in their teenage years and to adults of any age, as well as to parents of young children with CF. You might choose to be involved by talking to us on the telephone, or participating in a small group discussion, or maintaining a longer term input into this project as it develops over the next couple of years. It’s up to you! Please do not hesitate to get in touch if you are interested in being involved and want to find out more.