title: The NIDDK Central Repository at 8 years--ambition, revision, use and impact.
abstract: 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.
authors.affiliation: RTI International, Research Triangle Park, NC 27709, USA.
authors.forename: Charles F
authors.initials: CF
authors.lastname: Turner
authors.forename: Huaqin
authors.initials: H
authors.lastname: Pan
authors.forename: Gregg W
authors.initials: GW
authors.lastname: Silk
authors.forename: Mary-Anne
authors.initials: MA
authors.lastname: Ardini
authors.forename: Vesselina
authors.initials: V
authors.lastname: Bakalov
authors.forename: Stephanie
authors.initials: S
authors.lastname: Bryant
authors.forename: Susanna
authors.initials: S
authors.lastname: Cantor
authors.forename: Kung-yen
authors.initials: KY
authors.lastname: Chang
authors.forename: Michael
authors.initials: M
authors.lastname: DeLatte
authors.forename: Paul
authors.initials: P
authors.lastname: Eggers
authors.forename: Laxminarayana
authors.initials: L
authors.lastname: Ganapathi
authors.forename: Sujatha
authors.initials: S
authors.lastname: Lakshmikanthan
authors.forename: Joshua
authors.initials: J
authors.lastname: Levy
authors.forename: Sheping
authors.initials: S
authors.lastname: Li
authors.forename: Joseph
authors.initials: J
authors.lastname: Pratt
authors.forename: Norma
authors.initials: N
authors.lastname: Pugh
authors.forename: Ying
authors.initials: Y
authors.lastname: Qin
authors.forename: Rebekah
authors.initials: R
authors.lastname: Rasooly
authors.forename: Helen
authors.initials: H
authors.lastname: Ray
authors.forename: Jean E
authors.initials: JE
authors.lastname: Richardson
authors.forename: Amanda Flynn
authors.initials: AF
authors.lastname: Riley
authors.forename: Susan M
authors.initials: SM
authors.lastname: Rogers
authors.forename: Charlotte
authors.initials: C
authors.lastname: Scheper
authors.forename: Sylvia
authors.initials: S
authors.lastname: Tan
authors.forename: Stacie
authors.initials: S
authors.lastname: White
authors.forename: Philip C
authors.initials: PC
authors.lastname: Cooley
mesh_terms: D000818:Animals; D018070:Biological Specimen Banks; D003628:Database Management Systems; D016208:Databases, Factual; D003920:Diabetes Mellitus / Q000473:pathology*; D004066:Digestive System Diseases / Q000473:pathology*; D006801:Humans; D007674:Kidney Diseases / Q000473:pathology*; D054586:National Institute of Diabetes and Digestive and Kidney Diseases (U.S.); D014481:United States