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 Registry
|All ERKNet centers|
|CAKUT and ciliopathies||3||2||0||0||3||2|
|AD structural disorders||5||4||2||0||7||4|
|Pediatric CKD and dialysis||20||17|