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Cystic Fibrosis Trust

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.

The 2018 CF Insight Survey is now closed

Thank you to everyone who completed this year's CF Insight Survey. In the coming months we will be feeding back about the information you gave and looking to see how we can incorporate it into our work.

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.

How we developed this year's 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 in the second survey. 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, 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 with any comments or suggestions for improvement.

The last survey

In November 2016 we launched our brand new CF Insight Survey 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.

Download the 'at-a-glance' report

People with a wide range of experiences of CF helped to write the questions for the survey, and by holding the survey annually we are hoping to build a picture of how life with CF is changing as the years go by.

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


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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