Bookmarks
Population Size
11,000
People
Years
2007 - 2025
Associated BioSamples
None/not available
Geographic coverage
United Kingdom
Lead time
2-6 months
Summary
DOI for dataset
Documentation
Dataset type
Dataset population size
Synthetic data web link
Keywords
Dataset and BioSample Aliases
Observations
Observed Node | Disambiguating Description | Measured Value | Measured Property | Observation Date |
|---|---|---|---|---|
Findings | All observations of people with CF are recorded after their annual review encounter. The internal data dictionary are used as a scope and structure for how data should be recorded on the Registry site. | 11000 | The CF annual review dataset has a cut-off entry on every 31st of January. Each specialised CF Center must enter a minimum of one annual review and one encounter data for each of their patient s before the 31st of January | 31 Dec 2024 |
Provenance
Purpose of dataset collection
Source of data extraction
Collection source setting
Patient pathway description
Image contrast
Biological sample availability
Structural Metadata
Details
Publishing frequency
Version
Modified
08/10/2024
Distribution release date
31/10/2025
Citation Requirements
Coverage
Start date
31/10/2007
End date
29/05/2025
Time lag
Geographic coverage
Maximum age range
Follow-up
Dataset completeness
Accessibility
Language
Alignment with standardised data models
Controlled vocabulary
Format
Data Access Request
Dataset pipeline status
Access rights
Time to dataset access
Access request cost
Access method category
Access service description
Jurisdiction
Data use limitation
Data use requirements
Data Controller
Data Processor
Demographics
Enrichment and Linkage
Dataset Types: Health and disease, Treatments/Interventions, Measurements/Tests, Socioeconomic, Lifestyle, Registry
Dataset Sub-types: Rare diseases,Others,Others,Others,Others, Vaccines, Other diagnostics, Marital status,Ethnicity, Smoking, Disease registry (research)
Data Custodian: Cystic Fibrosis Trust
Collection Sources: Clinic, Secondary care - Outpatients, Prescribing - Hospital, Patient report outcome, Secondary care - In-patients, Community, Home
Publications about this dataset
Brain : a journal of neurology
Published - 2021