UK Cystic Fibrosis Registry

01/02/2024
27/01/2026
Data source
Human
Disease registry
Other
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Population Qualitative Data

Population age groups

  • Paediatric Population (< 18 years)
    • Neonate
      • Preterm newborn infants (0 – 27 days)
      • Term newborn infants (0 – 27 days)
    • Infants and toddlers (28 days – 23 months)
    • Children (2 to < 12 years)
    • Adolescents (12 to < 18 years)
  • Adult and elderly population (≥18 years)
    • Adults (18 to < 65 years)
      • Adults (18 to < 46 years)
      • Adults (46 to < 65 years)
    • Elderly (≥ 65 years)
      • Adults (65 to < 75 years)
      • Adults (75 to < 85 years)
      • Adults (85 years and over)

Estimated percentage of the population covered by the data source in the catchment area

99% of the population covered. Population age stratification can be found on Figure 1.2 in the UK CF Registry 2024 National report (https://www.cysticfibrosis.org.uk/about-us/uk-cf-registry/reporting-and-resources)

Description of the population covered by the data source in the catchment area whose data are not collected (e.g., people who are registered only for private care)

It is not recorded how many patients refuse consent to the registry. It is thought not many as the specialist centres ensure all patients are registered.
Population

Population size

11381

Active population size

10424