UK Cystic Fibrosis Registry
The UK Cystic Fibrosis Registry is a secure centralised database, sponsored and managed by Cystic Fibrosis Trust. It records health data on consenting people with cystic fibrosis (CF) in England, Wales, Scotland and Northern Ireland.
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.
- Registry user guide
- Study protocol
- Banding definitions
- Patient information sheets (adult / parent / child aged 6-12 / child aged 13-15)
- Patient consent form (adult / parent / child aged 13-15)
- Child assent form
- CF Registry Overview 2013
- ECFS Patient Registry reports website
- Interactive map showing the distribution of people with cystic fibrosis in the UK
- Registry privacy notice
- Registry data items (Demographic proforma and Annual Review proforma)
Take a look at the annual registry reports, including the 'at a glance' summaries, giving a quick overview of how measurable aspects of cystic fibrosis have changed since the previous year.
Make a donation
Every penny donated helps create a brighter future for people with cystic fibrosis, by funding support, research or other vital work.
Care and treatment
Discover the different medications and methods used to treat cystic fibrosis, as well as the many ways you can take care of yourself.
Get in touch with us to speak to someone on our Helpline, find out about an event or speak to our press team.