Version: 1.0.0 | Published: 8 Oct 2024 | Updated: 508 days ago
Summary
DOI Name:
10.1093/ije/dyx196
Documentation
Description:
The Annual Review Dataset contains routinely collected clinical data from annual review assessments of individuals diagnosed with cystic fibrosis. These reviews are part of standard clinical care and include comprehensive evaluations of respiratory health, nutritional status, treatment history, and disease complications. The dataset supports research into disease progression, treatment effectiveness, and clinical outcomes in cystic fibrosis. It can be used for epidemiological studies, healthcare planning, and evaluation of new interventions.
To find out more visit our: https://www.cysticfibrosis.org.uk/about-us/uk-cf-registry/reporting-and-resources
Coverage
Spatial:
United Kingdom
Typical Age Range:
0-120
Follow Up:
Continuous
Pathway:
Cystic fibrosis (CF) patients attend a yearly outpatient annual review, which
provides a structured assessment of clinical status, pulmonary function,
microbiology, and major CF related therapies. The minimum requirement for the UK
CF Registry is a submission of one annual review and one encounter dataset. The
annual review data are clearly marked and can be distinguished from encounter
based data collected between clinic visits. Annual review data typically cover
key areas such as: Core measurements (weight, height, BMI) Hospital admissions
and IV therapies, Pulmonary function, Chronic medications, Microbiology and
culture results, Health complications, Nutritional assessment, Physiotherapy and
lifestyle information Outcomes (including deaths and transplants). The annual
review is designed to provide a comprehensive snapshot of each patient health,
supporting consistent monitoring of disease progression and treatment
effectiveness.
Provenance
Origin
Purposes:
- Disease registry
- Audit
- Study
- Research cohort
- Trial
- Care
Sources:
- EPR
- Paper-based
- LIMS
Collection Situations:
- Clinic
- Secondary care - Outpatients
- Prescribing - Hospital
- Patient report outcome
- Secondary care - In-patients
- Community
- Home
Temporal
Accrual Periodicity:
Annual
Distribution Release Date:
31 October 2025
Start Date:
31 October 2007
End Date:
29 May 2025
Time Lag:
2-6 months
Accessibility
Access
Access Rights:
Access Service:
To be reviewed. Visit: https://www.cysticfibrosis.org.uk/about-us/uk-cf-registry
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. To find out more about data
access request, visit
https://www.cysticfibrosis.org.uk/the-work-we-do/uk-cf-registry/apply-for-data-from-the-uk-cf-registry
Delivery Lead Time:
2-6 months
Jurisdictions:
UK
Data Controller:
Cystic Fibrosis Trust
Data Processor:
Cystic Fibrosis Trust
Usage
Data Use Limitations:
- Research-specific restrictions
- Not for profit use
- No linkage
- Project-specific restrictions
Data Use Requirements:
- Ethics approval required
- Project-specific restrictions
- Collaboration required
- Not for profit use
- Time limit on use
- Disclosure control
- User-specific restriction
Resource Creators:
N/A
Format and Standards
Vocabulary Encoding Schemes:
OTHER
Conforms To:
OTHER
Languages:
en
Formats:
- csv
- xlsl
Enrichment and Linkage
Derivations:
Cystic Fibrosis Annual review
Observations
Statistical Population
Population Description
Population Size
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 December 2024