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UK Cystic Fibrosis Patient Annual Review

Population Size

11,000

People

Population Size statistic card

Years

2007 - 2025

Years statistic card

Associated BioSamples

None/not available

Associated BioSamples statistic card

Geographic coverage

United Kingdom

Geographic coverage statistic card

Lead time

2-6 months

Lead time statistic card

Summary

The Cystic Fibrosis Annual Review Record dataset contains structured clinical information collected during routine yearly assessments of individuals with cystic fibrosis. It includes data on lung function, nutritional status, microbiology, medications, complications, and other clinical indicators. The dataset captures longitudinal health information across multiple years, supporting the analysis of disease progression and treatment outcomes.

DOI for dataset

https://doi.org/10.1093/ije/dyx196

Documentation

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

Dataset type

Health and disease, Treatments/Interventions, Measurements/Tests, Socioeconomic, Lifestyle, Registry

Dataset population size

11000

Associated media

https://www.cysticfibrosis.org.uk/about-us/uk-cf-registry/reporting-and-resources

Synthetic data web link

https://www.cysticfibrosis.org.uk/about-us/uk-cf-registry/reporting-and-resources

Keywords

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

Disease registry, Audit, Study, Research cohort, Trial, Care

Source of data extraction

EPR, Paper-based, LIMS

Collection source setting

Clinic, Secondary care - Outpatients, Prescribing - Hospital, Patient report outcome, Secondary care - In-patients, Community, Home

Patient pathway description

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.

Image contrast

Not stated

Biological sample availability

None/not available

Structural Metadata

Details

Publishing frequency

Annual

Version

7.0.0

Modified

08/10/2024

Distribution release date

31/10/2025

Citation Requirements

N/A

Coverage

Start date

31/10/2007

End date

29/05/2025

Time lag

2-6 months

Geographic coverage

United Kingdom

Maximum age range

120

Follow-up

Continuous

Dataset completeness

https://www.cysticfibrosis.org.uk/about-us/uk-cf-registry/reporting-and-resources/2024-registry-report-highlights

Accessibility

Language

en

Alignment with standardised data models

OTHER

Controlled vocabulary

OTHER

Format

csv, xlsl

Data Access Request

Dataset pipeline status

Available

Access rights

https://www.cysticfibrosis.org.uk/the-work-we-do/uk-cf-registry/apply-for-data-from-the-uk-cf-registry

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. 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

Access method category

Varies based on project

Access service description

To be reviewed. Visit: https://www.cysticfibrosis.org.uk/about-us/uk-cf-registry

Jurisdiction

UK

Data use limitation

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

Data Controller

Cystic Fibrosis Trust

Data Processor

Cystic Fibrosis Trust

Investigations

https://www.cysticfibrosis.org.uk/about-us/uk-cf-registry

Demographics

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)

Collection Sources: Clinic, Secondary care - Outpatients, Prescribing - Hospital, Patient report outcome, Secondary care - In-patients, Community, Home

Relationships:

Publications about this dataset

Whole-exome sequencing reveals a role of HTRA1 and EGFL8 in brain white matter hyperintensities.Malik R, Beaufort N, Frerich S, Gesierich B, Georg...

Brain : a journal of neurology

Published - 2021