Core Outcome Set for Cystic Fibrosis (COS-CF)

Full title

Development of a universal Core Outcome Set for Cystic Fibrosis (COS-CF)

Study details

Please note the English survey is now closed for recruitment. However, the study is now recruiting people to complete a new survey in the following languages: French, Spanish, Italian, Polish, Romanian, Dutch and German. If you speak any of these languages, you can take part in the survey here.

In Cystic Fibrosis (CF) research, we test lots of treatments to see which ones work best. To do this, we look at outcomes, which tell the researcher important information about a person's health. 

There are lots of ways to measure a person's health, including testing: 

• How well their lungs work (lung function)
• How well they feel (including their symptoms)
• How happy or sad they feel (their mental health)

The problem is that research studies often use different outcomes, even when they are testing similar things. This makes it difficult to compare the results and discover what treatments work best. 

Our solution is to make a list of the most important outcomes to measure in all research studies for CF.  We have called this a Core Outcome Set for CF (COS-CF). This will make it easier to compare the results of lots of research studies and improve treatment for patients.

This study aims to determine which outcomes are the most important to people with CF, their families, health professionals and researchers in CF research. 

This study will take place online and it involves: 

• a single survey that will take 10-20 minutes to complete. 

Find out more about COS-CF here. 

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