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.
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.