The European Rare Kidney Disease Registry (ERKReg), established by ERKNet, consolidates data from over 17,000 patients with rare kidney diseases across Europe. By collaborating with edenceHealth, ERKReg has been transformed into the OMOP Common Data Model (CDM), ensuring data interoperability while maintaining privacy and security. This effort represents a significant step in harmonizing fragmented registry data, enabling robust longitudinal studies and facilitating global collaborations in rare disease research. With more than 90% of source variables mapped to OMOP standards, the initiative underscores the value of standardizing complex datasets for research on genetic components, disease progression, and treatment outcomes. This infrastructure empowers ERKNet to contribute meaningfully to broader network studies and foster impactful advancements in rare kidney disease care.
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Presented at the OHDSI Europe Symposium 2023, 3-Jul-2023
