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The Cystic Fibrosis Trust is collaborating with BREATHE to link their existing UK Cystic Fibrosis (UK CF) Registry with NHS healthcare records, to generate new insights into the condition.

The UK CF Registry

The UK CF Registry is a secure centralised database, sponsored and managed by the Cystic Fibrosis Trust. First established in 1995, it records longitudinal health data on consenting people with cystic fibrosis across England, Wales, Scotland and Northern Ireland. To date, it has captured data from over 12 000 individuals and covers 99% of the cystic fibrosis population in the UK.

The UK CF Registry represents an important source of data, which can be 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.

Linking data for new insights

Drawing on expertise within BREATHE, the partnership seeks to link de-identified data from the UK CF Registry with NHS healthcare records across the UK through Trusted Research Environment, SAIL Databank.

The process will increase the quality and quantity of the Registry data, creating a richer asset to explore more sophisticated research questions and further aid the Cystic Fibrosis Trust’s aim of creating a resource that can answer any question about cystic fibrosis.

In turn, this will increase the Trust’s ability to evaluate the effectiveness of treatments, form improved predictions about future care needs, and reduce the burden of care for people with cystic fibrosis.

Data linkage underway

The team are currently working to prepare the data for linkage across English, Welsh and Scottish data assets, with the potential for Northern Ireland to follow.

The newly linked data asset will be available in early 2022 for industry, academic, charity and NHS use through SAIL Databank. Researchers will be able to apply to the CF Trust independent registry research committee – which includes people with cystic fibrosis – to access de-identified data within a secure research environment.

“I and over 10,000 other people with cystic fibrosis share our data with the UK CF Registry in the hope that researchers can use this to further understand the condition and improve the lives of current, and future cystic fibrosis patients. Partnering with BREATHE will do this by increasing the visibility of the Registry dataset, in turn, helping to increase the information it holds.”

Flora Kennedy McConnel, has cystic fibrosis and is a member of the UK CF Registry Steering Committee

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