UK Cystic Fibrosis Registry (CYFI)

The UK Cystic Fibrosis Registry is a national, secure, centralized database sponsored and managed by the Cystic Fibrosis Trust, with UK National Health Service (NHS) research ethics approval and consent from each person for whom data are collected. First established in 1995, it records longitudinal health data on all people with cystic fibrosis (CF) in England, Wales, Scotland and Northern Ireland, and to date has captured data on over 12,000 individuals. If you are interested in using the CYFI dataset in the SAIL Databank, please contact SAIL via the website, along with also discussing your project with the Cystic Fibrosis Registry team for further advice via email at: registry@cysticfibrosis.org.uk

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Publisher:

SAIL

Geographic Coverage:

England, Northern Ireland, Scotland, Wales

Temporal Coverage:

2018-08-14T23:00:00.000Z/2021-09-08T23:00:00.000Z

Sample Size:

13000

Resource Type:

dataset

Available in Data Catalogs:

Health Data Research Innovation Gateway

ADR UK

ADR UK
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