Implementation of a Shared Data Repository and Common Data Dictionary for Fetal Alcohol Spectrum Disorders Research

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dc.contributor.author Arenson, Andrew D.
dc.contributor.author Bakhireva, Ludmila N.
dc.contributor.author Chambers, Christina D.
dc.contributor.author Deximo, Christina A.
dc.contributor.author Foroud, Tatiana
dc.contributor.author Jacobson, Joseph L.
dc.contributor.author Jacobson, Sandra W.
dc.contributor.author Jones, Kenneth Lyons
dc.contributor.author Mattson, Sarah N.
dc.contributor.author May, Philip A.
dc.contributor.author Moore, Elizabeth S.
dc.contributor.author Ogle, Kimberly
dc.contributor.author Riley, Edward P.
dc.contributor.author Robinson, Luther K.
dc.contributor.author Rogers, Jeffrey
dc.contributor.author Streissguth, Ann P.
dc.contributor.author Tavares, Michel C.
dc.contributor.author Urbanski, Joseph
dc.contributor.author Yezerets, Yelena
dc.contributor.author Surya, Radha
dc.contributor.author Stewart, Craig A.
dc.contributor.author Barnett, William K.
dc.date.accessioned 2010-05-26T12:08:39Z
dc.date.available 2010-05-26T12:08:39Z
dc.date.issued 2009
dc.identifier.citation Arenson, A.D., et al. (2009). Implementation of a Shared Data Repository and Common Data Dictionary for Fetal Alcohol Spectrum Disorders Research. Alcohol. en
dc.identifier.uri http://dx.doi.org/10.1016/j.alcohol.2009.08.007 en
dc.identifier.uri http://hdl.handle.net/2022/7194
dc.description.abstract Many previous attempts by fetal alcohol spectrum disorders researchers to compare data across multiple prospective and retrospective human studies have failed due to both structural differences in the collected data as well as difficulty in coming to agreement on the precise meaning of the terminology used to describe the collected data. Although some groups of researchers have an established track record of successfully integrating data, attempts to integrate data more broadly amongst different groups of researchers have generally faltered. Lack of tools to help researchers share and integrate data has also hampered data analysis. This situation has delayed improving diagnosis, intervention, and treatment before and after birth. We worked with various researchers and research programs in the Collaborative Initiative on Fetal Alcohol Spectrum Disorders (CI-FASD) to develop a set of common data dictionaries to describe the data to be collected, including definitions of terms and specification of allowable values. The resulting data dictionaries were the basis for creating a central data repository (CI-FASD Central Repository) and software tools to input and query data. Data entry restrictions ensure that only data which conform to the data dictionaries reach the CI-FASD Central Repository. The result is an effective system for centralized and unified management of the data collected and analyzed by the initiative, including a secure, long-term data repository. CI-FASD researchers are able to integrate and analyze data of different types, collected using multiple methods, and collected from multiple populations, and data are retained for future reuse in a secure, robust repository. en
dc.language.iso en_US en
dc.publisher Elsevier en
dc.relation.isversionof Definitive version available through ScienceDirect. en
dc.subject fetal alcohol spectrum disorders en
dc.subject data dictionary en
dc.subject data sharing en
dc.subject integrative research en
dc.title Implementation of a Shared Data Repository and Common Data Dictionary for Fetal Alcohol Spectrum Disorders Research en
dc.type Preprint en
dc.altmetrics.display true en_US

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