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.

Webpage:
https://www.healthdatagateway.org/dataset/b43309eb-7860-49b7-9f11-1a7a0fd5532e

Licence:
Name: HDR UK Innovation Gateway Access
URL: https://www.hdruk.ac.uk/infrastructure/gateway/terms-and-conditions/

Tags:

cystic fibrosis genotype

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