The ERKNet Consortium follows all consenting patients with rare kidney diseases prospectively in a central registry. The ERKNet registry serves two main purposes:

  • To inform how many patients with individual rare renal diseases are treated across the Network and where they are located. Clinical, genetic and histopathological diagnoses are recorded as appropriate. This will allow to identify and contact patients with a given disorder rapidly whenever novel therapeutic opportunities arise.
  • To comply with the Network’s mission to provide excellent treatment quality to all patients. Selected disease- or treatment-specific quality and performance indicators are monitored at the patient level. This will permit the participating European Reference Centers to review their diagnostic and therapeutic performance as well as patient outcomes relative to those achieved in the Network as a whole.



Current Number of Patients enrolled in the ERKNet-Registry


All ERKNet centers
pediatric adult total
total active total active total active
Glomerulopathies 273 272 207 184 480 456
Tubulopathies 122 110 10 9 132 119
Metabolic nephropathies 59 56 9 7 68 63
Thrombotic microangiopathies 48 40 9 9 57 49
CAKUT and ciliopathies 185 177 6 6 191 183
AD structural disorders 117 113 63 63 180 176
TOTAL 804 768 304 278 1108 1046
Pediatric CKD and dialysis 643 642
Pediatric transplantation 146 146



Current Number of Patients enrolled in the dRTA-Registry


All dRTA centers
pediatric adult total
30 1 31