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Cystic Fibrosis Patient Demographics

The UK Cystic Fibrosis Registry Demographic is made up of data items relating key demographic information about CF patients, relating to their diagnosis and genotype. The UK CF Registry is a centralised database of all 60 CF centres across the UK. Data are manually entered in calendar years by CF clinical teams for the 99% of people with a diagnosis of CF who consent to their data being donated to the Registry. Data are entered onto a secure web-portal. For more information please see www.cysticfibrosis.org.uk/registry and 'Data Resource Profile: The UK CF Registry' published in the International Journal of Epidemiology (2018 Feb 1;47(1)9-10e).

Description

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The UK Cystic Fibrosis Registry Demographic is made up of data items relating key demographic information about CF patients, relating to their diagnosis and genotype. The UK CF Registry is a centralised database of all 60 CF centres across the UK. Data are manually entered in calendar years by CF clinical teams for the 99% of people with a diagnosis of CF who consent to their data being donated to the Registry. Data are entered onto a secure web-portal. For more information please see www.cysticfibrosis.org.uk/registry and 'Data Resource Profile: The UK CF Registry' published in the International Journal of Epidemiology (2018 Feb 1;47(1)9-10e).

metasource: HDR UK
version: extracted_at: 2022-09-05T08:28:24.125862

Webpage:

https://www.healthdatagateway.org/dataset/c1682cb7-8f43-49fa-b66a-0a4a205885d3

Webpage

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https://www.healthdatagateway.org/dataset/c1682cb7-8f43-49fa-b66a-0a4a205885d3

metasource: HDR UK
version: extracted_at: 2022-09-05T08:28:24.125862

Licence:

Name: HDR UK Innovation Gateway Access

Licence name

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HDR UK Innovation Gateway Access

metasource: HDR UK
version: extracted_at: 2022-09-05T08:28:24.125862

URL: https://www.hdruk.ac.uk/infrastructure/gateway/terms-and-conditions/

Licence URL

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https://www.hdruk.ac.uk/infrastructure/gateway/terms-and-conditions/

metasource: HDR UK
version: extracted_at: 2022-09-05T08:28:24.125862

Tags:

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CYSTIC FIBROSIS
metasource: HDR UK
version: extracted_at: 2022-09-05T08:28:24.125862

cystic fibrosis

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