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)

All patients that provide informed consent at participating centres with a primary rare disease of the kidney or a syndromic disease associated with kidney manifestations are eligible for inclusion in the registry, irrespective of current age, age at disease presentation, disease duration, current kidney function and treatment status (conservative,dialysis, kidney transplantation). Participation in the ERKReg registry is a core commitment
of all member and Affiliated Partner centres of ERKNet. Completeness of recruitment is monitored by comparison of the cumulative enrolment figures with the numbers of total and incident patient figures provided by the centres at time of their application for membership or affiliation to ERKNet. In addition to the ERKNet member and Affiliated partner sites, participation in ERKReg (and any sub-registries as described below) is also open to interested centres outside ERKNet.

Patient breakdown by country
United Arab Emirates (AE): 12
Austria (AT): 262
Belgium (BE): 922
Czech Republic (CZ): 19
Denmark (DK): 22
Germany (DE): 2,020
Estonia (EE): 25
Spain (ES): 812
France (FR): 4,506
United Kingdom (GB): 159
Greece (GR): 190
Croatia (HR): 7
Hungary (HU): 25
Ireland (IE): 1245
Iran (IR): 15
Italy (IT): 4,990
Lithuania (LT): 567
Latvia (LV): 33
Netherlands (NL): 832
Norway (NO): 3
Poland (PL): 378
Portugal (PT): 5
Romania (RO): 191
Serbia (RS): 98
Russian Federation (RU): 12
Slovenia (SI): 485
Turkey (TR): 92
Population

Population size

17927

Active population size

17822

Population by age group

Age group Population size Active population size
Neonate
0
0
Infants and toddlers (28 days – 23 months)
329
329
Children (2 to < 12 years)
4632
4615
Adolescents (12 to < 18 years)
4369
4364
Adults (18 to < 46 years)
4282
4270
Adults (46 to < 65 years)
2451
2437
Adults (65 to < 75 years)
1045
1035
Adults (75 to < 85 years)
648
618
Adults (85 years and over)
171
154
Median observation time

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

4.29

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

4.29