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CF Insight Survey

The Cystic Fibrosis Trust's CF Insight Survey is released every year to help find out what cystic fibrosis means to people with the condition year on year, and to feed into the work of the Trust.

Infographic that says: 63% of adults with CF were in some kind of employment, and this number was very different for male and female respondents. 27% of women with CF were in full-time employment and 52% of men were in full-time employment

What is the CF Insight Survey?

We developed the first CF Insight Survey in 2016 to help build a picture of what cystic fibrosis looks like now in the UK. We had an incredible response, with more than 860 people with CF, their families, partners and friends taking part in the survey, answering questions on things like time spent on outpatient appointments, the financial burden of CF and their experiences of clinical trials.

We have just released our full report of the last two CF Insight Surveys, which is an accumulation of the things we learnt in the two reports. These and the at-a-glance reports for 2016 and 2018 can be downloaded below.

View the reports

Full report

The contents of the 2017/2018 report are the result of the first two Insight Surveys, which were published in 2017 and 2018. Download the full report below:

Full report

At-a-glance reports

Download the at-a-glance reports here:

2016 at-a-glance

2018 at-a-glance

How we develop the CF Insight Survey

To develop the 2018 CF Insight Survey, in summer and autumn 2017 we invited people with CF, partners and family members to participate in online focus groups and also to talk one-to-one about what we could explore. The subjects raised and discussed were all featured in this year's survey, and where they were not they are being explored in other ways - for example, as aspects of our Information and Support Team's work.

We also considered the wider world of CF and what the Trust needed to know about to inform future work. We looked at information already being gathered through the UK Cystic Fibrosis Registry and other work happening including local surveys at clinics - avoiding as much as possible the same people being asked the same thing repeatedly.

Finally, we worked hard to ensure that the survey was as accessible as possible and offered people the same questions no matter their relationship to CF, promoting inclusivity to ensure we could capture the views of a diverse community.

Feedback on the survey is welcome, please email involvement@cysticfibrosis.org.uk with any comments or suggestions for improvement.

Want to find out how the feedback you gave in the last Insight Survey has helped to form this year's survey? Hear from Paul Rymer, Head of Principal Involvement, to see how your experiences are shaping our work and turning up the volume on CF, and what's new in this year's survey.

UK CF Registry

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 CF on a yearly basis. Contributions to the survey will help direct the work of the Trust in the future.



I was impressed by how quickly the survey responses came in, and the time that people spent sharing their thoughts and feelings about living with cystic fibrosis. We learned a lot, including that two of the main things people would wish to see improved about both their care and access to clinical trials was better communication and information. Broad consensus on issues like this gives us a mandate to ensure there are improvements for everyone, no matter what their relationship is to cystic fibrosis.

Paul Rymer, Head of Principal Involvement

Research we're funding

The Trust is committed to funding and supporting cutting-edge research to find new and better treatments for cystic fibrosis. Take a look at some of that work and the progress that is being made.

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What is cystic fibrosis?

Find out more about cystic fibrosis, its diagnosis and how it is treated, as well as useful links to our publications and other organisations who can help.

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More information

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