The UK Cystic Fibrosis Registry is a secure centralised database, sponsored and managed by the Cystic Fibrosis Trust. It records demographic, health and treatment data on consenting people with cystic fibrosis (CF) in England, Wales, Scotland and Northern Ireland.
How the UK CF Registry works
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 the data can 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 UK CF Registry publishes data reports. You can view these, as well as other Registry publications, on our Reports page. Find out more about applying for Registry data.
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.
My CF Registry Patient Advisor
Apply to be a member of our patient advisory group, and you could help to develop the new My CF Registry web application and empower people with cystic fibrosis (CF) to take control of their condition and their data. Find out more about this role.