Belgian Cystic Fibrosis Registry

06/05/2024
17/10/2024
Data source
Human
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)

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)

By collecting data on almost all the patients with CF cared for in Belgium, the Belgian Cystic Fibrosis registry (BCFR) gives a good and quite complete picture of the epidemiology of the disease and the evolution of the health status of the patients. Every year, the 7 CF reference centres collect demographic, clinical and social data from the patients they care for after having received their consent. The centres receive from Sciensano a feedback report comparing the results in their centre with those of the other centres. They can share their experiences in order to improve the quality of care in their centre. This method to optimize the care to the patients is called peer learning via benchmarking. The consolidated national results are published in an annual report.