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Cystic Fibrosis Trust

Cystic Fibrosis Survey

Read the results of our first CF Insight Survey, and find out what cystic fibrosis (CF) means to you.

Last November we launched our brand new CF Insight Survey to help build a picture of what cystic fibrosis looks like in 2016. 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.

Focus group

We are looking for people to take part in one of two focus groups that will help to form the questions for the next CF Insight Survey. Focus group meetings will take place on 9 or 10 August from 7–9pm.

 

We want to hear from you if you are:

  • A person with cystic fibrosis,
  • A parent of someone with cystic fibrosis, or
  • A partner of someone with cystic fibrosis.

Email involvement@cysticfibrosis.org.uk to express your interest in joining our focus group or find out more about taking part.

If it is not possible for you to attend either focus group meeting but you would still like to contribute your views, please get in touch so that we can share some questions with you after the meetings via email.

As a member of our focus group, you will be asked to participate in group discussions over Skype to explore what questions you would like to see featured in the next CF Insight Survey, and what the Trust’s approach to improving CF care and services might look like.

 

David Ramsden, Chief Executive of the Trust, and Keith Brownlee, Director of Impact, will also be participating in these focus groups.

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 Engagement

Research

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.

Discover more

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.

Read on

More information

If you would like to find out more about any of our campaigns, publications or anything else, get in touch and we'll be happy to help.

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