Registry results are published each year in the annual report. Detailed and at-a-glance versions of the report are produced, both designed to be accessible to people with cystic fibrosis and their families, as well as their healthcare teams. The detailed report includes data about individual cystic fibrosis centres, to help the centres benchmark themselves against their peers, and provide people with cystic fibrosis information that applies to their specific care team.
Please read our latest 'At-A-Glance' report.
Distribution of CF in the UK
Take a look at our interactive map, detailing the distribution of people with cystic fibrosis across the UK.
In early 2015, we asked people with CF and their parents about plans for future development of the UK CF Registry, to makes sure that it meets their needs as well as those of heathcare teams, researchers and the wider NHS. Thank you to everyone who took part, helping us shape the future of the Registry. Take a look at the full survey, or the at-a-glance report to find out more.
Genotype data by nation and age
The following has been published as a result of a data request submitted to the UK CF Registry. The request, by the Cystic Fibrosis Trust, sought information to support multiple NHS Health Technology Appraisals (HTAs), current and upcoming. The request described populations potentially eligible for therapies ivacaftor and lumacaftor-ivacaftor.
For more information about genotypes across the UK, please see the UK Cystic Fibrosis Registry Annual Data Report 2015.
Genotype data by nation and age (PDF135 KB)*
*Taken from the UK Cystic Fibrosis Registry 2015 verified dataset.