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 412 404 254 230 666 634
Tubulopathies 150 138 19 17 169 155
Metabolic nephropathies 74 70 31 26 105 96
Thrombotic microangiopathies 115 105 11 11 126 116
CAKUT and ciliopathies 293 285 16 12 309 297
AD structural disorders 193 187 104 98 297 285
TOTAL 1237 1189 435 394 1672 1583
Pediatric CKD and dialysis 996 996
Pediatric transplantation 221 221



Current Number of Patients enrolled in the dRTA-Registry


All dRTA centers
pediatric adult total
41 1 42

European Reference Networks
This website is part of the project / joint action "777304 / ERK-REG" which has received funding from the European Union’s Health Programme (2014-2020)