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.
First glance of the 2018 report
We have produced a special edition ‘highlights report’ of 2018 UK CF Registry data for the European Cystic Fibrosis Society (ECFS) Conference. Download it here. The full report will be available by the end of August 2019.
Take a look
Download our latest at-a-glance report or read it here.
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. The request described populations potentially eligible for therapies ivacaftor (Kalydeco) lumacaftor-ivacaftor (Orkambi), tezacaftor-ivacaftor (Symkevi), and the Vertex triple therapies (tezacaftor-ivacaftor-VX659/VX445).
For more information about genotypes across the UK, please see the UK Cystic Fibrosis Registry Annual Data Report 2017.
Genotype data by nation and age (PDF 149 KB)*
*Taken from the UK Cystic Fibrosis Registry 2017 verified dataset.
PbR tariff bandings for people with cystic fibrosis in England
Since April 2013 Specialist Commissioners of cystic fibrosis care in England have made mandatory tariff payments to CF centres based on something called the ‘year of care tariff’. The tariff uses UK CF Registry data to categorise the severity of a person’s CF disease. The tariff only covers CF-related care at hospitals in England. For example, it does not include A&E visits, or admissions for trauma. It also excludes charged for high-cost CF drugs such as DNase, nebulised antibiotics and ivacaftor (Kalydeco).
You can view the NHS Payment by Results guidance here.
In 2018, the proportion of patients in England falling into each of the seven bandings was as follows: