engleski

Patients Registries

Patient registries collect, analyze and disseminate data and information on a group of people defined by a particular disease, condition, exposure or health-related service. Key principles: •Registries serve a predetermined scientific, clinical or/and public health (policy) purpose - the improvement of patient care and healthcare planning as well as social, economic and quality of life outcomes and other health indicators. •According to how their populations are defined, they can focus on a disease/condition, medical product or health service. •European registry landscape is a collection of divergent registries often built for a single purpose and with a limited user profile operating under different legal frameworks and with little standardization in interoperability and governance rules. •European registries face the issues of: o unstable funding, o legal ambiguity, o unclear stakeholder roles, o predominantly paper-based data collection, o lack of awareness of existing standards and standard processes, o compromised data quality, o lack of registry transparency and openness that support data access for research purposes o insufficient data dissemination

registries, interoperability, quality

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