Today the Cystic Fibrosis Trust is announcing the release of a new annual survey for people with cystic fibrosis, their friends and families, to help build a picture of what CF looks like in 2016. The survey covers areas ranging from the experience of participating in clinical trials to how long it takes people with the condition to travel to and from CF centres.
People with a wide range of experiences of CF helped to write the questions, and the Trust is hoping that holding the survey annually will build a picture of how life with CF is changing as the years go by.
The UK Cystic Fibrosis Registry has provided a vital insight into the treatment of cystic fibrosis. Partnering the information gathered in the Registry Annual Reports with the analysis the Trust will produce from the results of the CF Insight Survey will provide further understanding of life with cystic fibrosis in 2016. Contributions to the survey will help direct the work of the Trust in the future.
The CF Insight Survey closes on Friday 2 December, takes 10 minutes to complete and responses from this year’s survey will be used to form next year’s questions. If you have trouble accessing the online survey, you can call 0203 795 2142 to request a call-back. This will allow you to complete the survey over the phone. You can also email firstname.lastname@example.org if you have any enquiries relating to the survey.
The survey has been designed to capture the individual experiences of people living with cystic fibrosis, so parents with more than one child with CF will be able to complete the survey multiple times to represent the experiences of each of their children.
Paul Rymer, Head of Principal Involvement at the Trust said: “The CF Insight Survey will be huge in terms of impact if as many people as possible across the UK in the CF community can complete it.
“The survey is aimed at increasing our understanding of everyday life with cystic fibrosis in 2016. Responses will help us to build on our knowledge of what people's priorities, interests and concerns are in relation to living with cystic fibrosis, and help direct the work of the Trust in the future.”
Want your voice heard? Fill in the CF Insight Survey, and let us know what life with CF in 2016 looks like to you.