Apply for data from the UK CF 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.

• 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 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.
• The meeting on 9 April 2027 has a submission deadline of 19 March 2027.
• The meeting on 11 June 2027 has a submission deadline of 21 May 2027.
• The meeting on 13 August 2027 has a submission deadline of 23 July 2027.
• The meeting on 8 October 2027 has a submission deadline of 17 September 2027.
• The meeting on 10 December 2027 has a submission deadline of 19 November 2027.

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.

Download a full list of Registry data requests