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.

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.

How to apply for Registry data

Your request will be considered by the Registry Research Committee and a decision will be provided within six weeks. Data requests take a minimum of eight weeks to complete.

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.

Recent and ongoing Registry data requests

You can download a full list of Registry data requests dating from 2016.

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.

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