Denmark has an extensive collection of national and regional medical registries. There are many advantages to registry-based research when investigating genetic diseases which, due to their rarity, can be difficult to identify. In this study, we aimed to provide an updated overview of Danish registries for medical genetic conditions and describe how data linkage across registries can be used to collect data on genetic diseases at the individual level and at the family level. We present a list of medical genetic registries in Denmark at the national level, data sources from the departments of clinical genetics and other specialized centers, and project-specific data sources. We also summarize key general registries, such as the Danish National Registry of Patients, the Danish Medical Birth Registry, and the Civil Registration System, which are renowned for their comprehensive and high quality data, and are useful supplemental data sources for genetic epidemiology research. We describe the potential for data linkage across multiple registries, which allows for access to medical histories with follow-up time spanning birth to death. Finally, we provide a brief introduction to the Danish epidemiological research setting and legalities related to data access. The Danish collection of medical registries is a valuable resource for genetic epidemiology research.

译文

:丹麦拥有大量的国家和地区医疗注册机构。基于注册表的研究在调查遗传疾病时有许多优势,由于其稀有性,可能难以识别。在这项研究中,我们旨在提供有关医学遗传状况的丹麦注册管理机构的最新概述,并描述如何将各个注册管理机构之间的数据链接用于收集个人和家庭一级的遗传疾病数据。我们提供了丹麦国家一级的医学遗传注册机构清单,来自临床遗传学部门和其他专门中心的数据来源,以及针对特定项目的数据来源。我们还总结了关键的一般注册机构,例如丹麦国家患者注册中心,丹麦医疗出生注册中心和民事注册系统,这些机构以其全面而高质量的数据而著称,并且是遗传流行病学研究的有用补充数据源。我们描述了跨多个注册表的数据链接的潜力,这允许访问具有从出生到死亡的后续时间的医疗历史记录。最后,我们简要介绍了丹麦的流行病学研究背景以及与数据访问相关的合法性。丹麦医学注册资料库是遗传流行病学研究的宝贵资源。

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