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 16 9 0 0 16 9
Tubulopathies 11 9 0 0 11 9
Metabolic nephropathies 4 4 0 0 4 4
Thrombotic microangiopathies 3 1 0 0 3 1
CAKUT and ciliopathies 20 17 0 0 20 17
AD structural disorders 12 9 0 0 12 9
TOTAL 66 49 0 0 66 49
Pediatric CKD and dialysis 47 47
Pediatric transplantation 2 2



Current Number of Patients enrolled in the dRTA-Registry


All dRTA centers
pediatric adult total
6 0 6