Cuticchia A Jamie, Cooley Philip C, Hall R David, Qin Ying
Duke Institute for Genome Sciences and Policy, Duke University, Durham, North Carolina, USA.
BMC Med Inform Decis Mak. 2006 Apr 4;6:19. doi: 10.1186/1472-6947-6-19.
The National Institute of Diabetes and Digestive and Kidney Diseases have established central repositories for the collection of DNA, biological samples, and clinical data to be catalogued at a single site. Here we present an overview of the site which stores the clinical data and links to biospecimens.
The NIDDK Data repository is a web-enabled resource cataloguing clinical trial data and supporting information from NIDDK supported studies. The Data Repository allows for the co-location of multiple electronic datasets that were created as part of clinical investigations. The Data Repository does not serve the role of a Data Coordinating Center, but rather as a warehouse for the clinical findings once the trials have been completed. Because both biological and genetic samples are collected from many of the studies, a data management system for the cataloguing and retrieval of samples was developed.
The Data Repository provides a unique resource for researchers in the clinical areas supported by NIDDK. In addition to providing a warehouse of data, Data Repository staff work with the users to educate them on the datasets as well as assist them in the acquisition of multiple data sets for cross-study analysis. Unlike the majority of biological databases, the Data Repository acts both as a catalogue for data, biosamples, and genetic materials and as a central processing point for the requests for all biospecimens. Due to regulations on the use of clinical data, the ultimate release of that data is governed under NIDDK data release policies. The Data Repository serves as the conduit for such requests.
美国国立糖尿病、消化和肾脏疾病研究所已建立中央储存库，用于收集DNA、生物样本和临床数据，并在单一地点进行编目。在此，我们概述了存储临床数据并与生物样本建立链接的该站点。
NIDDK数据储存库是一个基于网络的资源库，对来自NIDDK支持研究的临床试验数据和辅助信息进行编目。该数据储存库允许将作为临床研究一部分创建的多个电子数据集集中存放。数据储存库并非充当数据协调中心的角色，而是在试验完成后作为临床研究结果的仓库。由于许多研究都收集了生物样本和基因样本，因此开发了一个用于样本编目和检索的数据管理系统。
数据储存库为NIDDK支持的临床领域研究人员提供了独特的资源。除了提供数据仓库外，数据储存库工作人员还与用户合作，就数据集对他们进行培训，并协助他们获取多个数据集以进行跨研究分析。与大多数生物数据库不同，数据储存库既是数据、生物样本和基因材料的编目工具，也是所有生物样本请求的中央处理点。由于临床数据使用方面的规定，该数据的最终发布受NIDDK数据发布政策的制约。数据储存库充当此类请求的渠道。
