Sample and data sharing: Observations from a central data repository

Sample and data sharing: Observations from a central data repository
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DOI:
10.1016/j.clinbiochem.2013.11.014
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发表时间:
2014-03-01
影响因子:
2.8
通讯作者:
Cooley, Philip C.
Cooley, Philip C.
中科院分区:
医学3区
文献类型:
--
作者:
Ardini, Mary-Anne;Pan, Huaqin;Cooley, Philip C.

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目的:从2003年到2013年,RTI International担任国家糖尿病,消化和肾脏疾病研究所(NIDDK)的数据存储库。RTI与两个样本存储库合作伙伴密切合作,构建和维护中央存储库(CR),使数据和样本可供批准的请求者使用。在本文中,我们回顾了建立该机制的各个方面,详细介绍了数据和样本共享的挑战和限制,并根据不断变化的研究资助环境探讨了资源共享的未来。设计和方法:有效的维护要求系统灵活和动态,同时符合既定的数据标准。我们多年来担任NIDDK的CR,对管理知识库的困难有了一些观察,知识库的运作顾名思义依赖于许多外部方,他们的专业知识和效率直接影响知识库的运作。生物银行业可能会继续在全球范围内变得更加集中,以研究特定的遗传疾病和监测我们环境的健康。需要新兴技术与基础设施之间的动态关系,以支持未来的研究,这需要提供支持的组织有能力在遵守既定标准的同时保持灵活性。(C)2013年加拿大临床化学家协会。爱思唯尔公司出版All rights reserved.
Objectives: From 2003 to 2013, RTI International served as the data repository for the National Institute of Diabetes, Digestive and Kidney Diseases (NIDDK). RTI worked closely with two sample repository partners to build and maintain the Central Repository (CR) that made data and samples available to approved requestors. In this paper, we recap aspects of establishing the mechanism; detail the challenges and limitations of data and sample sharing, and explore the future of resource sharing in light of the evolving environment of research funding.Design and methods: Effective maintenance required the system to be flexible and dynamic while at the same time compliant with established data standards.Results: Our years serving as the CR for NIDDK have yielded a number of observations about the difficulties of running a repository, an operation that is by definition dependent on many outside parties whose degree of expertise and efficiency have a direct impact on repository functioning.Conclusion: The bio-banking industry will likely continue to become more globally centralized for studying specific genetic diseases and monitoring the health of our environment. The dynamic relationship between emerging technologies and the infrastructure will be needed to support future research that requires the ability of organizations providing support to remain flexible even while following established standards. (C) 2013 The Canadian Society of Clinical Chemists. Published by Elsevier Inc. All rights reserved.