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

被引:12
作者
Turner, Charles F. [1 ,2 ,3 ]
Pan, Huaqin [1 ]
Silk, Gregg W. [4 ]
Ardini, Mary-Anne [1 ]
Bakalov, Vesselina [1 ]
Bryant, Stephanie [1 ]
Cantor, Susanna [1 ]
Chang, Kung-yen [5 ]
DeLatte, Michael [1 ]
Eggers, Paul [6 ]
Ganapathi, Laxminarayana [1 ]
Lakshmikanthan, Sujatha [1 ]
Levy, Joshua [1 ]
Li, Sheping [1 ]
Pratt, Joseph [1 ]
Pugh, Norma [1 ]
Qin, Ying [1 ]
Rasooly, Rebekah [6 ]
Ray, Helen [1 ]
Richardson, Jean E. [1 ]
Riley, Amanda Flynn [1 ]
Rogers, Susan M. [1 ]
Scheper, Charlotte [1 ]
Tan, Sylvia [1 ]
White, Stacie [1 ]
Cooley, Philip C. [1 ]
机构
[1] RTI Int, Res Triangle Pk, NC 27709 USA
[2] CUNY, Queens Coll, Flushing, NY 11367 USA
[3] CUNY, Grad Ctr, Flushing, NY 11367 USA
[4] N Carolina State Univ, Poole Coll Management, Raleigh, NC 27695 USA
[5] N Carolina State Univ, Bioinformat Res Ctr, Raleigh, NC 27695 USA
[6] NIDDK, Bethesda, MD 20892 USA
来源
DATABASE-THE JOURNAL OF BIOLOGICAL DATABASES AND CURATION | 2011年
基金
美国国家卫生研究院;
关键词
GENOME-WIDE ASSOCIATION; MEAN BLOOD-GLUCOSE; MICROVASCULAR COMPLICATIONS; DIABETIC-NEPHROPATHY; RISK; VARIABILITY; LOCI; GENETICS; TOOLKIT; HBA(1C);
D O I
10.1093/database/bar043
中图分类号
Q [生物科学];
学科分类号
07 ; 0710 ; 09 ;
摘要
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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页数:16
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