THE VALUE OF A REGIONAL 'LIVING' COVID-19 REGISTRY AND THE CHALLENGES OF KEEPING IT ALIVE.

Perspectives in health information management(2021)

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摘要
A living COVID-19 registry represents a mechanism to facilitate optimal sharing of data between providers, consumers, health information networks, and health plans through technology-enabled, secure-access electronic health information. Our approach also involves a diversity of new roles in the field, such as using residents, staff, and the quality department, in addition to professional data extractors and the health informatics team.Initially, due to the overwhelming number of infections that continues to accelerate, and the labor/time intense nature of the project, only a small fraction of all patients with COVID-19 had all parameters entered in the registry. Therefore, this report also offers lessons learned and discusses sustainability issues, should others wish to establish a registry. It also highlights the registry's local and broader public health significance. Beginning in June 2021, whole-genome sequencing results such as lineages harboring important viral mutations, or variants of concern will be linked to the clinical meta-data.
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关键词
COVID-19,SARS-CoV-2,electronic medical record,epidemiology,genomic epidemiology,genomics,mortality,registry
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