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Cystic Fibrosis Trust joins BREATHE as a Supporting Partner

BREATHE – the Health Data Research Hub for Respiratory Health and the Cystic Fibrosis Trust form new partnership to expand use of the UK Cystic Fibrosis Registry.

The new partnership seeks to harness health data to further research into cystic fibrosis, working with the existing UK Cystic Fibrosis (UK CF) Registry.

A rich source of data

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 a rich 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.

Stimulating new research

The partnership will aim to raise awareness of the UK CF Registry amongst new audiences, improving access and stimulating research.

Drawing on expertise within BREATHE, the partnership will also explore opportunities to link de-identified data from the UK CF Registry with NHS healthcare records across the UK.

We’re delighted to be partnering with the Cystic Fibrosis Trust to build on the success of the UK Cystic Fibrosis Registry and widen access to this fantastic respiratory data resource. The linkage of UK Cystic Fibrosis Registry data with NHS records is a hugely exciting prospect. It is a great example of the potential to improve usability and amplify the impact of existing health data.

Professor Aziz SheikhDirector, BREATHE

This is an excellent way of raising the profile of cystic fibrosis and the high quality data curated with the support of people with cystic fibrosis and their clinical teams over many years. Attracting the best data scientists to investigate cystic fibrosis is the key to unlocking more vital knowledge that can be used to improve clinical care for people with cystic fibrosis.

Rebecca CosgriffDirector of Data & Quality Improvement, Cystic Fibrosis Trust

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 data set, in turn, helping to increase the information it holds.

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

The inclusion of the CF Registry into the BREATHE Hub is fantastic news that will have a direct and positive impact for patients living with cystic fibrosis. The CF Registry is a powerful resource that will support the research taking place on respiratory health through BREATHE both in the UK and globally. The Cystic Fibrosis Trust are active members of the UK Health Data Alliance and, as part of work to bring together the UK health research sector, it is also great to see our partnership with them continue to develop in this tangible way.

Ben GordonExecutive Director, Hubs and Data Improvement, HDR UK

Further information

Details of the UK Cystic Fibrosis Registry dataset can be found on the Health Data Research Innovation Gateway.

UK CF Registry data from 2019 is currently available to access through Trusted Research Environment, SAIL Databank. Access can be requested through the Health Data Research Innovation Gateway.

More details on the fully linked dataset will be available in 2021. Please direct any questions to breathe.admin@ed.ac.uk.

Related links

Visit the Cystic Fibrosis Trust website

More about the UK Cystic Fibrosis Registry on the Cystic Fibrosis Trust website