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ERKNet is an European Network of Healthcare Professionals specialized in rare kidney diseases. ERKReg, the Network's online patient registry, is a unique resource of real-world information on the demographics, management and outcomes of rare kidney diseases, facilitates the identification of patients for innovative research and allows monitoring of key performance and outcome indicators in the participating specialized healthcare units. ERKNet provides information and offers various education and training activities.
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ERKNet, the European Reference Network for rare kidney diseases, brings together healthcare professionals specializing in the diagnosis and management of these conditions. The network supports collaboration among participating specialist healthcare units and provides information for people and professionals concerned with rare kidney diseases. Its activities also include education and training, helping to share expertise across its professional community.
A central resource is ERKReg, ERKNet’s online patient registry. It collects real-world information about the demographics, management and outcomes of rare kidney diseases. The registry helps identify patients who may be suitable for innovative research and enables participating healthcare units to monitor key performance and outcome indicators. By combining specialist collaboration, data resources and learning activities, ERKNet supports research and the ongoing assessment of care for people with rare kidney diseases. Its work is focused on connecting expertise and making structured information available to strengthen understanding of these conditions and their management across the network.
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