[An integrated system of neurovascular and mental disease registries].

Abstract

As a result of the legal regulations in 2018 that took into account the development of international registry building practice and organized the operation of 18 priority domestic registries, the management of personal health data became more widely organized, the operating environment could be put on a modern basis and the data processing and analysis process could be renewed. Based on the authorization for handling personal data, it became technically possible to connect data from different data sources, which was exploited to create a complex register system in the case of the National Stroke Registry and the National Affective Diseases Registry. The register system can receive data from the sector’s central data systems, the hospital’s information technology system, and directly from patient providers via web forms. The data is managed by a multi-level database system supported by automated processing processes, the operation of which is supported by dashboards and reporting functions. In the higher layers of the processing flow, the elementary data form an OMOP-based data model, and the events are assembled into chains, enabling the analysis of complex patient journeys. The system currently manages more than 50 million health care events, nearly 100 million medical documents and more than 200 million recipes, which is an outstanding data asset at the international level. Data security is served by complex protection operations, including pseudonymization of data and separation of research data markets. Thanks to their complexity, data depth and security, these registries can provide valuable data sources for countless researches. Orv Hetil. 2024; 165(24–25): 955–964.