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Cystic Fibrosis Patient CFQ-R
Population Size
Not reported
Years
2020 - 2020
Associated BioSamples
None/not available
Geographic coverage
United Kingdom
Lead time
2-6 months
Summary
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.
DOI for dataset
Documentation
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).
Dataset type
Health and disease, Registry
Dataset sub-type
Respiratory
Keywords
Provenance
Image contrast
Not stated
Biological sample availability
None/not available
Structural Metadata
Details
Publishing frequency
Annual
Version
6.0.0
Modified
08/10/2024
Distribution release date
15/02/2020
Citation Requirements
Cystic Fibrosis Trust
Coverage
Start date
01/01/2020
End date
15/02/2020
Time lag
More than 6 months
Geographic coverage
United Kingdom
Maximum age range
150
Accessibility
Language
en
Controlled vocabulary
LOCAL
Format
csv
Data Access Request
Dataset pipeline status
Not available
Access rights
Time to dataset access
2-6 months
Access request cost
Whilst the UK CF Registry does not charge for data, it must recoup costs of data handling (including extract and cleaning), project management, and analysis (where applicable) on behalf of third parties. The charging structure outlined below is designed to be fair, proportionate,
and transparent whilst furthering the Registry’s aim of stimulating research use of the data for the benefit of people with cystic fibrosis.
https://www.cysticfibrosis.org.uk/the-work-we-do/uk-cf-registry/apply-for-data-from-the-uk-cf-registryAccess method category
Varies based on project
Jurisdiction
GB
Data Controller
Cystic Fibrosis Trust
Data Processor
Cystic Fibrosis Trust