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Dawn of a new era for data

Today the Cystic Fibrosis Trust launched a new software system for the UK CF Registry, the Trust’s secure database that contains clinical data on thousands of people with cystic fibrosis in the UK who have consented to its use.

The Registry, which has been sponsored and managed by the Trust since 2007, is one of the leading databases of its kind in the world, allowing the Trust to publish public reports, advance research and improve clinical care in cystic fibrosis.

This update makes it easier for CF teams to enter data, and unlocks the potential of the Registry for its next phase of development, which the Cystic Fibrosis Trust committed to in response to a survey of our community.

Over the next two years, Registry-based clinical trials will revolutionise the way we think about developing new CF therapies, and a new portal will give people with cystic fibrosis access to their own data and the ability to contribute directly to their records by submitting their own information.