Taskforce Registries & Outcomes

This Taskforce will work with the Network centers to accomplish two key aims: 

• The development of a core registry capturing all patients with rare kidney diseases followed in the Network, which will be well interconnected with existing disease specific registries 

• The identification of key quality and outcome indicators and their continuous monitoring in the Network

The Taskforce will align with the registry and quality initiatives in the other ERNs to achieve the highest possible level of harmonization and interoperability across the European Reference Networks.