Horn Elizabeth J, Bialick Jim F, Terry Sharon F
Genetic Alliance , Washington, DC.
Biopreserv Biobank. 2010 Jun;8(2):115-7. doi: 10.1089/bio.2010.0007.
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.
疾病倡导组织在登记处和生物样本库的开发与管理中发挥着越来越大的作用。遗传联盟制定了标准，以协助各组织选择供应商，并对潜在供应商进行了技术评估调查。超过半数的供应商提供可定制解决方案，接受调查的生物样本库提供了各种基因组服务。近四分之三的机构收集去识别化数据，很少使用受控词汇，这限制了再次联系参与者和共享数据的能力。虽然这并不代表完整的登记处和生物样本库情况，但它是协助各组织评估合适解决方案的一个起点。
