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Cystic Fibrosis Trust

UK CF Registry

The UK Cystic Fibrosis Registry is a secure centralised database, sponsored and managed by the Cystic Fibrosis Trust. It records health data on consenting people with cystic fibrosis (CF) in England, Wales, Scotland and Northern Ireland.

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.

Useful links

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.


Registry reports


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. 

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Make a donation

Every penny donated helps create a brighter future for people with cystic fibrosis, by funding support, research or other vital work.

Make a difference

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.

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More information

If you would like to find out more about any of our campaigns, publications or anything else, get in touch and we'll be happy to help.

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