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
- Download and complete the Data Request form or Data Request Amendment form
- Read the Data Sharing Policy
- Submit the form to firstname.lastname@example.org
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.
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.
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