How does the Registry work?
CF care teams enter data at every specialist centre and clinic across the UK, with over 99% of people with CF consenting to their data being submitted.
How can Registry data be used?
Non-identifiable Registry data is used to improve the health of people with cystic fibrosis through research, to guide quality improvement at care centres and to monitor the safety of new drugs. A strict evaluation process, overseen by a committee of experts, ensures that Registry data is used in line with the consent that has been provided, and that it has maximum impact for people with cystic fibrosis.
Reports and more information
Each year the Registry publishes data reports. You can view these, as well as other Registry publications, on our reports page.
Find out more about working our work with the pharmaceuticals industry in our leaflet, ‘Working with industry to make medicines safer’.
Registry data is also used to provide NHS commissioners with banding information for care centre Payment-by-Results.
Apply for data
Find out more about who can apply for data from the Registry, how you can submit a request, and recent and ongoing Registry data requests.