UK Cystic Fibrosis Registry

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. 

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.

The UK Cystic Fibrosis Registry holds information about people with cystic fibrosis who give explicit consent for their healthcare teams to submit their demographic, clinical care, and health outcomes data. Consent is given in writing to cystic fibrosis care teams by people with cystic fibrosis, or a parent/guardian on their behalf. Healthcare teams in CF care centres can use Registry data to follow progress of their patients, and get an overall picture of CF at their centre.

Pseudonymised forms of the data (that cannot identify individuals) from all the CF centres and clinics is used for research, and to plan and improve the quality of clinical care. Examples of this include:

• To get an overall picture of the number of people with CF in the UK, the state of their health and where they are treated.
• To see if there is a difference between the health of people in different hospitals and different regions of the UK.
• To look at the reasons for any differences and use them to make improvements to the care of people with cystic fibrosis.
• To plan future services for people with CF in the UK.
• To identify trends that may not be obvious in one hospital, for example if new infections are emerging.
• To identify groups of patients who could take part in research studies and clinical trials.
• To monitor the safety and effectiveness of cystic fibrosis treatments.
• To produce Annual Reports each year that summarise this information, available here. We also compare the health of people with CF in the UK to the health of people with CF in other countries. 

We plan to follow the health status of people with cystic fibrosis by linking Registry data to information collected by the National Health Service (NHS) and the Office of National Statistics (ONS). This linked information will be used for research, and to plan and improve the quality of clinical care, as outlined above.

The release and use of any data from the Registry requires the approval of the Registry Steering Committee. The Registry Steering Committee includes cystic fibrosis doctors, a parent representative, a patient representative, and employees of the Cystic Fibrosis Trust.

Sometimes we appoint third parties as ‘data processors’ to take on administrative tasks for us, such as sending two-factor authentication codes to help Registry users securely login. We always have a formal agreement in place with these processors to protect the security of the data, and at no point do they have access to identifiable data.

The Data Controller (as required by the Data Protection Act) is Cystic Fibrosis Trust. If you have any questions about the use of Registry data, please contact [email protected]. Cystic Fibrosis Trust is planning to maintain the Registry for the foreseeable future and keep the data indefinitely. Queries about how Cystic Fibrosis Trust protects data should be directed to our Data Protection Office by emailing [email protected], or writing to:

Data Protection Officer
Cystic Fibrosis Trust
1 Aldgate
London
EC3N 1RE

You can access  Cystic Fibrosis Trust’s overarching privacy policy here.

If you are interested in working with the UK CF Registry, would like to request data, or have any questions, please contact us at [email protected].