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

RADeep currently covers approximately 30–50% of the diagnosed rare anaemia disorder (RAD) patient population in participating countries.
The platform includes data from 19 European countries and integrates national and regional registries, hospital databases, and expert centres.
While comprehensive in several countries (e.g., France, Italy, Spain), coverage varies depending on national registry maturity and data sharing agreements. Population estimates are based on national prevalence rates and expert input from ERN-EuroBloodNet.

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)

The population not covered by RADeep includes patients receiving care exclusively in private healthcare settings, those followed in non-participating hospitals or countries, and undiagnosed or misdiagnosed individuals. Additionally, some migrant or vulnerable populations may be underrepresented due to barriers in diagnosis, registration, or data sharing. The degree of under coverage varies by country depending on the structure of national healthcare and registry systems.
Population

Population size

4864

Active population size

4844

Population by age group

Age groupPopulation size
Paediatric Population (< 18 years)
1960
Adult and elderly population (≥18 years)
2900