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Landscape Analysis of Registries and Biobanks: A Tool for Disease Advocacy Organizations to Enhance Translational Research Systems

机译:注册管理机构和生物库的态势分析:疾病倡导组织增强转化研究系统的工具

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摘要

Disease advocacy organizations play an increased role in the development and management of registries and biorepositories. Genetic Alliance developed criteria to assist organizations in selecting vendors and conducted a technical assessment survey of potential vendors. More than half offered customizable solutions, and biorepositories surveyed offered a variety of genomic services. Nearly three-quarters collect deidentified data, and few use controlled vocabulary, limiting the ability to recontact participants and share data. While this does not represent the complete registry and biorepository landscape, it is a starting point to assist organizations in assessing appropriate solutions.
机译:疾病倡导组织在注册表和生物存储库的开发和管理中发挥着越来越重要的作用。遗传联盟制定了帮助组织选择供应商的标准,并对潜在供应商进行了技术评估调查。超过一半的公司提供了可定制的解决方案,接受调查的生物资源库提供了各种基因组服务。将近四分之三的人收集了身份不明的数据,很少使用受控词汇表,这限制了重新联系参与者和共享数据的能力。尽管这并不代表完整的注册表和生物存储库格局,但这是协助组织评估适当解决方案的起点。

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