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 40 35 11 10 51 45
Tubulopathies 24 24 0 0 24 24
Metabolic nephropathies 20 17 0 0 20 17
Thrombotic microangiopathies 11 10 0 0 11 10
CAKUT and ciliopathies 41 39 0 0 41 39
AD structural disorders 19 16 5 5 24 21
TOTAL 155 141 16 15 171 156
Pediatric CKD and dialysis 106 106
Pediatric transplantation 37 37



Current Number of Patients enrolled in the dRTA-Registry


All dRTA centers
pediatric adult total
5 0 5