Registry resources
Here you can find resources and documents for users of the UK CF Registry.
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Registry user guide
Access the comprehensive guide to understanding and navigating the UK Cystic Fibrosis Registry.
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Registry protocol
Access the complete protocol document outlining the design, methodologies, and data collection processes for the UK Cystic Fibrosis Registry.
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Patient information sheets
Download information sheets for patients whose data is included in the UK CF Registry.
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Patient consent/assent forms
Download consent forms for those whose data is included in the UK CF Regsitry.
For children aged 12 and under, download the child assent form.
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Registry privacy notice
Take a look at the privacy information for those whose data is included in the UK CF Registry.
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Bandings
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 charges for high-cost CF drugs such as nebulised antibiotics and ivacaftor (Kalydeco).
You can view the NHS Payment by Results guidance here.
In 2025, the proportion of patients in England falling into each of the seven bandings was as follows:
Adult sites
- Band 1: 16%
- Band 1A: 1.5%
- Band 2: 17%
- Band 2A: 41%
- Band 3: 21%
- Band 4: 3%
- Band 5: 0.5%
Paediatric sites
- Band 1: 31%
- Band 1A: 3%
- Band 2: 43%
- Band 2A: 14%
- Band 3: 8%
- Band 4: 1%
- Band 5: 0%
UK CF Registry banding matrix
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ECFS Patient Registry reports
The European Cystic Fibrosis Society (ECFS) publishes annual reports with demographic and clinical data from people with CF throughout Europe and neighbouring countries who agree to participate in the Registry.
Take a look at the Patient Registry reports on the ECFS website
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Registry data items
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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.
What is the UK CF Registry?
The UK Cystic Fibrosis Registry is a secure database which records health data on consenting people with CF.
Apply for data
Researchers can apply for access to Registry data for use in studies which benefit people with CF.
CF distribution map
Take a look at our map showing how the CF population is distributed across the country.