Apply for data from the UK CF Registry
Our registry contains a large amount of clinical and demographic data on cystic fibrosis (CF) in the UK, from 1996 to the present day.
The next deadline for submissions is 17 July 2026.
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Who can apply for data from the Registry?
Researchers from recognised institutions can apply for access to aggregated, anonymised, or pseudonymised data from the UK CF Registry to perform their own analysis for the benefit of people with cystic fibrosis.
The UK CF Registry sends annual data to the ECFS Patient Registry.
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How to apply for Registry data
- Download and complete the Data Request form or Data Request Amendment form
- Read the Data Sharing Policy
- Submit the form to [email protected]
Your request will be considered by the Registry Steering Committee at regular meetings.
- The meeting on 7 August 2026 has a submission deadline of 17 July 2026.
- The meeting on 9 October 2026 has a submission deadline of 18 September 2026.
- The meeting on 11 December 2026 has a submission deadline of 20 November 2026.
A decision will be given a week after the meeting. Data requests take up to 12 weeks to complete.
The Registry team is here to help. For advice or assistance, please contact us well before the submission deadline – at least two weeks in advance, and preferably during the planning stage – at [email protected].
Download the demographic template and annual review template to see what is collected in the UK CF Registry.
You can also download our public UK CF Registry Annual Data Reports.
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Recent and ongoing Registry data requests
Research we fund
We fund research to tackle some of the most pressing issues in CF today. Find out how your donations are making a difference.
What is CF?
Cystic fibrosis, or CF, affects the lungs, digestive system and other organs, and there are over 10,600 people living with it in the UK.
Contact us
Get in touch with us to speak to someone on our Helpline, find out about an event or speak to our Press Team.