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Cystic Fibrosis Patient CFQ-R

The UK Cystic Fibrosis Registry CFQ-R is made up of many data items relating to the quality of life tool 'Cystic Fibrosis Questionnaire - Revised' captured for CF patients. 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 CFQ-R is made up of many data items relating to the quality of life tool 'Cystic Fibrosis Questionnaire - Revised' captured for CF patients. 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/1a4b65e9-5241-4081-9cbb-43a8c8c6ea3b

Webpage

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https://www.healthdatagateway.org/dataset/1a4b65e9-5241-4081-9cbb-43a8c8c6ea3b

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

More detailed information about this field from each metasource.

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

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

Tags:

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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