Inside the lab with Emily
About the UK CF Registry
The UK CF Registry records health data on consenting people with CF in England, Northern Ireland, Scotland and Wales and is sponsored and hosted by the Trust. The UK CF Registry was established in 1996 and contains information from 99% of people with CF in the UK.
The purpose of the UK CF Registry is to improve the health of people with CF. It provides an overview of the health of people with CF, helping people to understand their condition and giving clinical teams evidence to improve the quality of care.
The data held by the Registry is collected from annual review visits at CF care centres across the UK. The data include age and sex information, treatments people have received and their health outcomes.
Data from the UK CF Registry are used for a range of purposes, including helping commissioners provide appropriate funding to NHS centres, and monitoring the safety and effectiveness of new treatments.
They are also used by researchers such as Emily, after review and approval by the independent Registry Research Committee of the research they'd like to conduct, to identify trends and patterns that tell us new things about CF and potentially better ways to support people in the future.