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Cystic Fibrosis Trust

Reporting and resources

Cystic fibrosis (CF) care teams enter data to the UK CF Registry at every specialist centre and clinic across the UK, with over 99% of people with CF consenting to their data being submitted.

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.

Registry reports

Please read our latest 'At-A-Glance' report.

     Report     Summary   Additional resources
  2016
  2016
 
    2015
    2015
Scotland report 
     2014     2014   Scotland report
     2013     2013   
     2012     2012   
     2011        
     2010    
     2009     2009   FAQs document for 2009 
     2008    
     2007    
     2004    

Distribution of CF in the UK

Take a look at our interactive map, detailing the distribution of people with cystic fibrosis across the UK.

Registry survey

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.

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 2016, the proportion of patients falling into each of the seven bandings was as follows:

Band 1 Band 1A Band 2 Band 2A   Band 3  Band 4 Band 5 
16%
3%
19% 30% 25% 6% 2%




FAQs

Public awareness of cystic fibrosis is low; here's your chance to find out the answers to the most commonly asked questions and discover further resources.

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In the news

Check out the latest news about cystic fibrosis, from new developments in research to nationwide campaigns, including local, national and international stories.

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Clinical Trials Accelerator Platform

Find out how we're increasing access to clinical trials for people with CF across the UK.

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