European Rare Blood Disorders Platform

25/07/2025
25/07/2025
Data source
Human
Disease registry
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Population Qualitative Data

Population age groups

  • In utero
  • 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

ENROL integrates data from multiple national registries and expert centers across Europe within the ERN-EuroBloodNet network.
It is estimated to cover approximately 70–90% of diagnosed patients with rare hematological disorders in the participating countries.
Coverage may vary depending on country-specific factors such as healthcare system organization, registry participation, and diagnosis rates.
The catchment area includes the full population of participating European countries, currently encompassing over 30 nations.
ENROL aims to minimize data fragmentation and improve patient identification and follow-up across the region.

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)

While ENROL aims to capture data on all patients with rare hematological disorders within its catchment area, certain populations may not be fully represented.
This includes patients exclusively managed in private healthcare settings or outside of the ERN-EuroBloodNet network, those who have not provided informed consent, and individuals not yet diagnosed or referred to specialized centers.