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Publication Details
AFRICAN RESEARCH NEXUS
SHINING A SPOTLIGHT ON AFRICAN RESEARCH
biochemistry, genetics and molecular biology
Implementation of a shared data repository and common data dictionary for fetal alcohol spectrum disorders research
Alcohol, Volume 44, No. 7-8, Year 2010
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Description
Many previous attempts by fetal alcohol spectrum disorders researchers to compare data across multiple prospective and retrospective human studies have failed because of both structural differences in the collected data and 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 among 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 that 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, using multiple methods, and collected from multiple populations, and data are retained for future reuse in a secure, robust repository. © 2010 Elsevier Inc.
Authors & Co-Authors
Arenson, Andrew D.
United States, Indianapolis
Indiana University-purdue University Indianapolis
Bakhireva, Ludmila N.
United States, La Jolla
University of California, San Diego
Chambers, Christina D.
United States, La Jolla
University of California, San Diego
Foroud, Tatiana M.
United States, Indianapolis
Indiana University School of Medicine
Jacobson, Joseph L.
United States, Detroit
Wayne State University
Jacobson, Sandra W.
United States, Detroit
Wayne State University
Jones, Kenneth Lyons
United States, La Jolla
University of California, San Diego
Mattson, Sarah N.
United States, San Diego
San Diego State University
May, Philip A.
United States, Albuquerque
The University of new Mexico
Moore, Elizabeth S.
United States, Indianapolis
St. Vincent Indianapolis Hospital
Riley, Edward Patrick
United States, San Diego
San Diego State University
Robinson, Luther K.
United States, Buffalo
University at Buffalo, the State University of new York
Rogers, Jeffrey L.
United States, Indianapolis
Indiana University-purdue University Indianapolis
Barnett, William K.
United States, Indianapolis
Indiana University-purdue University Indianapolis
Statistics
Citations: 17
Authors: 14
Affiliations: 10
Identifiers
Doi:
10.1016/j.alcohol.2009.08.007
ISSN:
07418329
Research Areas
Substance Abuse
Study Design
Randomised Control Trial
Cohort Study
Phenomenological Study