What is the Registry?

ERKReg is the first and largest Europe-wide registry for all rare kidney diseases. 

ERKReg collects prospective information from all patients with rare kidney diseases within the network who agree to have their de-identified data recorded.

The registry helps clinicians, researchers and pharmaceutical industry to generate more knowledge about rare kidney diseases and focus their research and drug development to improve the quality of life of our patients. The registry also aims to help patient organizations, health authorities and policy makers in optimizing the support for patients with rare kidney disorders. 

ERKReg is currently receiving patient data from more than 70 hospitals in 24 countries. 

Aims of the Registry

Demographic Analysis

The ERKReg registry collects data from 24 countries and allows to analyse the frequency and characteristics of more than 300 rare kidney diseases in different regions of Europe.

Natural Disease History

Patient information is collected once a year by the medical teams to follow the clinical course over time. This will help to identify risk factors for complications and disease progression.

New Therapies

ERKReg data facilitates multicentre research projects to explore novel treatment strategies and new drugs that can improve the patient’s wellbeing and quality of life.

The registry allows to find patients with a particular disease for which a new treatment is being developed. The registry team brokers the matching of patients with upcoming clinical trial opportunities.

In this way, the registry supports the rapid access of our patients to new therapies.


The expert centres participating in ERKReg continuously follow the performance of their patient management according to key quality indicators of diagnostic and therapeutic interventions.

ERKReg provides performance statistics for each centre and the entire registry. This allows the centres to compare the quality of their management with that of the overall ERKNet community.

In this way, we support the excellence and continuous improvement of care in all ERKNet centres throughout Europe.