The UK CF Registry is a secure centralised database supported and managed by the CF trust. The data is used confidentially, with your consent, to improve the health of people with CF through research, quality improvement and monitoring of new drugs. It is also used by commissioners to support the amount of local funding recieved by each centre to allow us to care better for the needs of the local population.
You will be asked if you are happy to consent to your data being added to the registry at the time of diagnosis, at the point of transition to adult services and occaisionally at other times. You can withdraw your consent at any time. Please click on the link to access more information on the CF trust website including detailed patient information leaflets or ask your team for more information.
http://www.cysticfibrosis.org.uk/the-work-we-do/uk-cf-registry