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      ‘What’s in the NIDDK CDR?’—public query tools for the NIDDK central data repository

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          Abstract

          The National Institute of Diabetes and Digestive Disease (NIDDK) Central Data Repository (CDR) is a web-enabled resource available to researchers and the general public. The CDR warehouses clinical data and study documentation from NIDDK funded research, including such landmark studies as The Diabetes Control and Complications Trial (DCCT, 1983–93) and the Epidemiology of Diabetes Interventions and Complications (EDIC, 1994–present) follow-up study which has been ongoing for more than 20 years. The CDR also houses data from over 7 million biospecimens representing 2 million subjects. To help users explore the vast amount of data stored in the NIDDK CDR, we developed a suite of search mechanisms called the public query tools (PQTs). Five individual tools are available to search data from multiple perspectives: study search, basic search, ontology search, variable summary and sample by condition. PQT enables users to search for information across studies. Users can search for data such as number of subjects, types of biospecimens and disease outcome variables without prior knowledge of the individual studies. This suite of tools will increase the use and maximize the value of the NIDDK data and biospecimen repositories as important resources for the research community.

          Database URL: https://www.niddkrepository.org/niddk/home.do

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          The NIDDK Central Repository at 8 years—Ambition, Revision, Use and Impact

          The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) Central Repository makes data and biospecimens from NIDDK-funded research available to the broader scientific community. It thereby facilitates: the testing of new hypotheses without new data or biospecimen collection; pooling data across several studies to increase statistical power; and informative genetic analyses using the Repository’s well-curated phenotypic data. This article describes the initial database plan for the Repository and its revision using a simpler model. Among the lessons learned were the trade-offs between the complexity of a database design and the costs in time and money of implementation; the importance of integrating consent documents into the basic design; the crucial need for linkage files that associate biospecimen IDs with the masked subject IDs used in deposited data sets; and the importance of standardized procedures to test the integrity data sets prior to distribution. The Repository is currently tracking 111 ongoing NIDDK-funded studies many of which include genotype data, and it houses over 5 million biospecimens of more than 25 types including serum, plasma, stool, urine, DNA, red blood cells, buffy coat and tissue. Repository resources have supported a range of biochemical, clinical, statistical and genetic research (188 external requests for clinical data and 31 for biospecimens have been approved or are pending). Genetic research has included GWAS, validation studies, development of methods to improve statistical power of GWAS and testing of new statistical methods for genetic research. We anticipate that the future impact of the Repository’s resources on biomedical research will be enhanced by (i) cross-listing of Repository biospecimens in additional searchable databases and biobank catalogs; (ii) ongoing deployment of new applications for querying the contents of the Repository; and (iii) increased harmonization of procedures, data collection strategies, questionnaires etc. across both research studies and within the vocabularies used by different repositories. Database URL: http://www.niddkrepository.org
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            NIDDK data repository: a central collection of clinical trial data

            Background 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. Description 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. Conclusion 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.
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              Assessing the need for a standardized cancer human biobank (caHUB): Findings from a national survey with cancer researchers

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                Author and article information

                Journal
                Database (Oxford)
                Database (Oxford)
                daba
                databa
                Database: The Journal of Biological Databases and Curation
                Oxford University Press
                1758-0463
                2013
                7 February 2013
                : 2013
                : bas058
                Affiliations
                1RTI International, Social, Statistical and Environmental Sciences, PO Box 12194, Research Triangle Park, NC 27709, 2National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), Division Of Kidney, Urologic, & Hematologic Diseases, Bethesda, MD 29892 and 3City University of New York (Queens College and the Graduate Center), Flushing, NY 11367, USA
                Author notes
                *Corresponding author: Tel: +1 919 541 6509; Fax: +1 919 316 3539; Email: pcc@ 123456rtii.org

                †These authors contributed equally to this work.

                Citation details: Pan Huaqin, Ardini Mary-Anne, Bakalov Vesselina, et al. ‘What’s in the NIDDK CDR?’—public query tools for the NIDDK central data repository. Database ( 20 1 2) Vol. 2012: article ID bas058; doi:10.1093/database/bas058.

                Article
                bas058
                10.1093/database/bas058
                3625049
                23396299
                2e7ebceb-05c6-4832-b405-4194f46ac384
                Published by Oxford University Press on behalf of US Government 2013.
                History
                : 20 September 2012
                : 5 November 2012
                : 28 November 2012
                Page count
                Pages: 11
                Categories
                Original Article

                Bioinformatics & Computational biology
                Bioinformatics & Computational biology

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