CF Registry - Annual Data Reports

The UK CF Registry tracks the health of people with Cystic Fibrosis throughout the UK; its primary purpose is to help drive up the standard of clinical care.

In 2007 the Cystic Fibrosis Trust implemented the new CF Registry using the user friendly web-based technology of Port CF (replacing the old UK CF Database).

Clinical Data is collected in specialist CF Centres and network shared care clinics at the patient's Annual Review (with the consent of the patient) and entered into Port CF, a database written specifically for this purpose. Each year an anonymised version of the complete set of data is analysed and a 'snapshot' of demographic and clinical outcome data is produced and published in the Annual Data Report.

This report identifies new trends in the health of people with CF and provides important information that contributes to creating standards of care, designing clinical trials to test new therapies, and improving the delivery of care.

The most recent Annual Data Reports can be downloaded here:

Annual Data Report 2008
Containing more detail about complications and therapies for all patients in the UK and more comparisons of outcomes between centres and clinics.

Annual Data Report 2007
The first from the new CF Registry

Annual Data Report 2004

Researchers who wish to apply for data from the CF Registry can do so here.