| Implementation of a shared data repository and common data dictionary for fetal alcohol spectrum disorders research. | |
| | |
MedLine Citation:
|
PMID: 20036486 Owner: NLM Status: MEDLINE |
Abstract/OtherAbstract:
|
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. |
| | |
Authors:
|
Andrew D Arenson; Ludmila N Bakhireva; Christina D Chambers; Christina A Deximo; Tatiana Foroud; Joseph L Jacobson; Sandra W Jacobson; Kenneth Lyons Jones; Sarah N Mattson; Philip A May; Elizabeth S Moore; Kimberly Ogle; Edward P Riley; Luther K Robinson; Jeffrey Rogers; Ann P Streissguth; Michel C Tavares; Joseph Urbanski; Yelena Yezerets; Radha Surya; Craig A Stewart; William K Barnett |
Related Documents
:
|
10163756 - Remote access to neurosurgical icu physiological data using the world wide web. 20832436 - Collecting accurate secondary foodscape data. a reflection on the trials and tribulations. 2880386 - Humoral mediation of the development of the mammalian nervous system. 19464406 - Regulatory and ethical considerations for linking clinical and administrative databases. 10163756 - Remote access to neurosurgical icu physiological data using the world wide web. 9261916 - Ethnography: an overview. |
Publication Detail:
|
Type: Journal Article; Research Support, N.I.H., Extramural; Research Support, Non-U.S. Gov't Date: 2009-12-29 |
Journal Detail:
|
Title: Alcohol (Fayetteville, N.Y.) Volume: 44 ISSN: 1873-6823 ISO Abbreviation: Alcohol Publication Date: 2010 Nov-Dec |
Date Detail:
|
Created Date: 2010-11-29 Completed Date: 2011-03-11 Revised Date: 2011-11-01 |
Medline Journal Info:
|
Nlm Unique ID: 8502311 Medline TA: Alcohol Country: United States |
Other Details:
|
Languages: eng Pagination: 643-7 Citation Subset: IM |
Copyright Information:
|
Copyright © 2010 Elsevier Inc. All rights reserved. |
Affiliation:
|
University Information Technology Services, Indiana University, 535 W. Michigan St., Indianapolis, IN 46202, USA. aarenson@iupui.edu |
Export Citation:
|
APA/MLA Format Download EndNote Download BibTex |
| MeSH Terms | |
Descriptor/Qualifier:
|
Alcohol Drinking Biomedical Research* Craniofacial Abnormalities Data Collection Databases as Topic* / organization & administration Female Fetal Alcohol Syndrome* / diagnosis, prevention & control, therapy Humans Neuropsychological Tests Pregnancy Prospective Studies Questionnaires Retrospective Studies Software |
| Grant Support | |
ID/Acronym/Agency:
|
1U24AA014818/AA/NIAAA NIH HHS; 2U24AA014818-04/AA/NIAAA NIH HHS |
From MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine
Previous Document: A neurodevelopmental framework for the development of interventions for children with fetal alcohol ...
Next Document: A 14-year retrospective maternal report of alcohol consumption in pregnancy predicts pregnancy and t...