UK CF Registry joins UK Health Data Research Alliance

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The UK CF Registry, a secure centralised database, sponsored and managed by the Cystic Fibrosis Trust, which records health data on consenting people with cystic fibrosis (CF) in England, Wales, Scotland and Northern Ireland, has joined the UK Health Data Research Alliance along with seven other organisations.

Leading health organisations, research institutes and charities, along with the UK CF Registry, announced today that they are joining the UK Health Data Research Alliance to accelerate progress in medicine and health. These include three of the UK’s largest NHS trusts – Barts Health, University Hospitals Birmingham and Nottingham University Hospitals – as well as UK Biobank, The Brain Tumour Charity, NIHR BioResource and Healthcare Quality Improvement Partnership (HQIP).

What is the UK Health Data Research Alliance?

The Alliance develops and co-ordinates the adoption of tools, techniques, conventions, technologies, and designs that enable the use of health data in a trustworthy and ethical way for research and innovation. Its members formulate best practice and standards in areas such as privacy, transparency, public engagement, inclusivity and governance to ensure that health data is shared and used responsibly by researchers and innovators.

How will joining the Alliance help people with cystic fibrosis?

Being part of the Alliance will help to raise the profile of the UK CF Registry as an example of best practice when it comes to collecting, storing and sharing healthcare data. This will encourage more researchers to apply to access anonymised data for the benefit of people with CF, as well as facilitating collaboration with other data controllers and disease areas.

Director of Data & Quality Improvement at the Cystic Fibrosis Trust, Rebecca Cosgriff, said: “The Cystic Fibrosis Trust is delighted to join the UK Health Data Research Alliance. The UK CF Registry is a world leading research resource, thanks to the support of people with CF, their families and clinical teams. Being part of the Alliance is a great opportunity to demonstrate our long-standing commitment to transparency, collaboration and innovation when it comes to maximising the potential of donated data.”

Find out more about the UK CF Registry, or make a donation today to support work like this.

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