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 patients visiting rare disease experts’ centres

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)

All patients suffering from rare diseases and visiting rare disease expert centres
Family linkage

Family linkage available in the data source permanently or can be created on an ad hoc basis

Ad hoc
Population

Population size

1000000

Active population size

1185441

Population by age group

Age group Population size Active population size
Paediatric Population (< 18 years)
479704
469663
Term newborn infants (0 – 27 days)
12193
10413
Infants and toddlers (28 days – 23 months)
99225
94648
Children (2 to < 12 years)
242280
239803
Adolescents (12 to < 18 years)
126006
124799
Adults (18 to < 46 years)
398745
393805
Adults (46 to < 65 years)
204058
194398
Elderly (≥ 65 years)
148378
127575
Adults (65 to < 75 years)
87702
78370
Adults (75 to < 85 years)
47899
39896
Adults (85 years and over)
12777
9309
Median observation time

Median time (years) between first and last available records for unique individuals

0.84

Median time (years) between first and last available records for unique active individuals (alive and currently registered)

1.00