Implementation of a Distributed Architecture for Managing Collection and Dissemination of Data for Fetal Alcohol Spectrum Disorders Research
Identifieur interne : 000225 ( Istex/Curation ); précédent : 000224; suivant : 000226Implementation of a Distributed Architecture for Managing Collection and Dissemination of Data for Fetal Alcohol Spectrum Disorders Research
Auteurs : Andrew Arenson [États-Unis] ; Ludmila Bakhireva [États-Unis] ; Tina Chambers [États-Unis] ; Christina Deximo [États-Unis] ; Tatiana Foroud [États-Unis] ; Joseph Jacobson [États-Unis] ; Sandra Jacobson [États-Unis] ; Lyons Jones [États-Unis] ; Sarah Mattson [États-Unis] ; Philip May [États-Unis] ; Elizabeth Moore [États-Unis] ; Kimberly Ogle [États-Unis] ; Edward Riley [États-Unis] ; Luther Robinson [États-Unis] ; Jeffrey Rogers [États-Unis] ; Ann Streissguth [États-Unis] ; Michel Tavares [États-Unis] ; Joseph Urbanski [États-Unis] ; Helen Yezerets [États-Unis] ; A. Stewart [États-Unis]Source :
- Lecture Notes in Computer Science [ 0302-9743 ] ; 2007.
Abstract
Abstract : We implemented a distributed system for management of data for an international collaboration studying Fetal Alcohol Spectrum Disorders (FASD). Subject privacy was protected, researchers without dependable Internet access were accommodated, and researchers’ data were shared globally. Data dictionaries codified the nature of the data being integrated, data compliance was assured through multiple consistency checks, and recovery systems provided a secure, robust, persistent repository. The system enabled new types of science to be done, using distributed technologies that are expedient for current needs while taking useful steps towards integrating the system in a future grid-based cyberinfrastructure. The distributed architecture, verification steps, and data dictionaries suggest general strategies for researchers involved in collaborative studies, particularly where data must be de-identified before being shared. The system met both the collaboration’s needs and the NIH Roadmap’s goal of wide access to databases that are robust and adaptable to researchers’ needs.
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DOI: 10.1007/978-3-540-69968-2_4
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Elizabeth Moore<affiliation><mods:affiliation>E-mail: ESMoore@stvincent.org</mods:affiliation><wicri:noCountry code="no comma">E-mail: ESMoore@stvincent.org</wicri:noCountry></affiliation>Le document en format XML
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last="Bakhireva">Ludmila Bakhireva</name><affiliation wicri:level="1"><mods:affiliation>University of California, San Diego, Department of Pediatrics, La Jolla, CA 92093, USA</mods:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>University of California, San Diego, Department of Pediatrics, La Jolla, CA 92093</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>E-mail: lbakhireva@ucsd.edu</mods:affiliation><country wicri:rule="url">États-Unis</country></affiliation></author><author><name sortKey="Chambers, Tina" sort="Chambers, Tina" uniqKey="Chambers T" first="Tina" last="Chambers">Tina Chambers</name><affiliation wicri:level="1"><mods:affiliation>University of California, San Diego, Department of Pediatrics, La Jolla, CA 92093, USA</mods:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>University of California, San Diego, Department of Pediatrics, La Jolla, CA 92093</wicri:regionArea></affiliation><affiliation 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Medicine, Department of Medical and Molecular Genetics, Indianapolis, IN 46202, USA</mods:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Indiana University School of Medicine, Department of Medical and Molecular Genetics, Indianapolis, IN 46202</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>E-mail: tforoud@iupui.edu</mods:affiliation><country wicri:rule="url">États-Unis</country></affiliation></author><author><name sortKey="Jacobson, Joseph" sort="Jacobson, Joseph" uniqKey="Jacobson J" first="Joseph" last="Jacobson">Joseph Jacobson</name><affiliation wicri:level="1"><mods:affiliation>Wayne State University, Department of Psychiatry and Behavioral Neurosciences, Detroit, Michigan, USA</mods:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Wayne State University, Department of Psychiatry and Behavioral Neurosciences, Detroit, Michigan</wicri:regionArea></affiliation><affiliation 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California, San Diego, Department of Pediatrics, La Jolla, CA 92093, USA</mods:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>University of California, San Diego, Department of Pediatrics, La Jolla, CA 92093</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>E-mail: klyons@ucsd.edu</mods:affiliation><country wicri:rule="url">États-Unis</country></affiliation></author><author><name sortKey="Mattson, Sarah" sort="Mattson, Sarah" uniqKey="Mattson S" first="Sarah" last="Mattson">Sarah Mattson</name><affiliation wicri:level="1"><mods:affiliation>San Diego State University, Center for Behavioral Teratology, San Diego, CA 92120, USA</mods:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>San Diego State University, Center for Behavioral Teratology, San Diego, CA 92120</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>E-mail: smattson@sdsu.edu</mods:affiliation><country wicri:rule="url">États-Unis</country></affiliation></author><author><name sortKey="May, Philip" sort="May, Philip" uniqKey="May P" first="Philip" last="May">Philip May</name><affiliation wicri:level="1"><mods:affiliation>University of New Mexico, Center on Alcoholism, Substance Abuse & Addictions, Albuquerque, NM 87106, USA</mods:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>University of New Mexico, Center on Alcoholism, Substance Abuse & Addictions, Albuquerque, NM 87106</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>E-mail: pmay@unm.edu</mods:affiliation><country wicri:rule="url">États-Unis</country></affiliation></author><author><name sortKey="Moore, Elizabeth" sort="Moore, Elizabeth" uniqKey="Moore E" first="Elizabeth" last="Moore">Elizabeth Moore</name><affiliation wicri:level="1"><mods:affiliation>St. Vincent’s Hospital, Indianapolis, IN 46032, USA</mods:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>St. Vincent’s Hospital, Indianapolis, IN 46032</wicri:regionArea></affiliation><affiliation><mods:affiliation>E-mail: ESMoore@stvincent.org</mods:affiliation><wicri:noCountry code="no comma">E-mail: ESMoore@stvincent.org</wicri:noCountry></affiliation></author><author><name sortKey="Ogle, Kimberly" sort="Ogle, Kimberly" uniqKey="Ogle K" first="Kimberly" last="Ogle">Kimberly Ogle</name><affiliation wicri:level="1"><mods:affiliation>San Diego State University, Center for Behavioral Teratology, San Diego, CA 92120, USA</mods:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>San Diego State University, Center for Behavioral Teratology, San Diego, CA 92120</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>E-mail: kowens@sdsu.edu</mods:affiliation><country wicri:rule="url">États-Unis</country></affiliation></author><author><name sortKey="Riley, Edward" sort="Riley, Edward" uniqKey="Riley E" first="Edward" last="Riley">Edward Riley</name><affiliation wicri:level="1"><mods:affiliation>San Diego State University, Center for Behavioral Teratology, San Diego, CA 92120, USA</mods:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>San Diego State University, Center for Behavioral Teratology, San Diego, CA 92120</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>E-mail: eriley@sdsu.edu</mods:affiliation><country wicri:rule="url">États-Unis</country></affiliation></author><author><name sortKey="Robinson, Luther" sort="Robinson, Luther" uniqKey="Robinson L" first="Luther" last="Robinson">Luther Robinson</name><affiliation wicri:level="1"><mods:affiliation>State University of New York, Buffalo, New York 14260, USA</mods:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>State University of New York, Buffalo, New York 14260</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>E-mail: lutherkr@buffalo.edu</mods:affiliation><country wicri:rule="url">États-Unis</country></affiliation></author><author><name sortKey="Rogers, Jeffrey" sort="Rogers, Jeffrey" uniqKey="Rogers J" first="Jeffrey" last="Rogers">Jeffrey Rogers</name><affiliation wicri:level="1"><mods:affiliation>Indiana University, University Information Technology Services, Indianapolis, IN 46202, USA</mods:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Indiana University, University Information Technology Services, Indianapolis, IN 46202</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>E-mail: jlrogers@indiana.edu</mods:affiliation><country wicri:rule="url">États-Unis</country></affiliation></author><author><name sortKey="Streissguth, Ann" sort="Streissguth, Ann" uniqKey="Streissguth A" first="Ann" last="Streissguth">Ann Streissguth</name><affiliation wicri:level="1"><mods:affiliation>University of Washington Medical School, Department of Psychiatry and Behavioral Sciences, Fetal Alcohol and Drug Unit, Seattle, Washington 98195, USA</mods:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>University of Washington Medical School, Department of Psychiatry and Behavioral Sciences, Fetal Alcohol and Drug Unit, Seattle, Washington 98195</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>E-mail: astreiss@u.washington.edu</mods:affiliation><country wicri:rule="url">États-Unis</country></affiliation></author><author><name sortKey="Tavares, Michel" sort="Tavares, Michel" uniqKey="Tavares M" first="Michel" last="Tavares">Michel Tavares</name><affiliation wicri:level="1"><mods:affiliation>Indiana University, University Information Technology Services, Indianapolis, IN 46202, USA</mods:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Indiana University, University Information Technology Services, Indianapolis, IN 46202</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>E-mail: mtavares@indiana.edu</mods:affiliation><country wicri:rule="url">États-Unis</country></affiliation></author><author><name sortKey="Urbanski, Joseph" sort="Urbanski, Joseph" uniqKey="Urbanski J" first="Joseph" last="Urbanski">Joseph Urbanski</name><affiliation wicri:level="1"><mods:affiliation>Indiana University School of Medicine, Department of Medical and Molecular Genetics, Indianapolis, IN 46202, USA</mods:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Indiana University School of Medicine, Department of Medical and Molecular Genetics, Indianapolis, IN 46202</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>E-mail: joaurban@iupui.edu</mods:affiliation><country wicri:rule="url">États-Unis</country></affiliation></author><author><name sortKey="Yezerets, Helen" sort="Yezerets, Helen" uniqKey="Yezerets H" first="Helen" last="Yezerets">Helen Yezerets</name><affiliation wicri:level="1"><mods:affiliation>Indiana University, University Information Technology Services, Indianapolis, IN 46202, USA</mods:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Indiana University, University Information Technology Services, Indianapolis, IN 46202</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>E-mail: yyezert@indiana.edu</mods:affiliation><country wicri:rule="url">États-Unis</country></affiliation></author><author><name sortKey="Stewart, A" sort="Stewart, A" uniqKey="Stewart A" first="A." last="Stewart">A. Stewart</name><affiliation wicri:level="1"><mods:affiliation>Indiana University, Office of the Vice President for Information Technology, Bloomington, IN 47405, USA</mods:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Indiana University, Office of the Vice President for Information Technology, Bloomington, IN 47405</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>E-mail: yyezert@indiana.edu</mods:affiliation><country wicri:rule="url">États-Unis</country></affiliation><affiliation wicri:level="1"><mods:affiliation>E-mail: stewart@iu.edu</mods:affiliation><country wicri:rule="url">États-Unis</country></affiliation></author></titleStmt><publicationStmt><idno type="wicri:source">ISTEX</idno><idno type="RBID">ISTEX:2A30315D2B3F630CFAFAB7BD600D6C9735C1C063</idno><date when="2007" year="2007">2007</date><idno type="doi">10.1007/978-3-540-69968-2_4</idno><idno 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aarenson@indiana.edu</mods:affiliation><country wicri:rule="url">États-Unis</country></affiliation></author><author><name sortKey="Bakhireva, Ludmila" sort="Bakhireva, Ludmila" uniqKey="Bakhireva L" first="Ludmila" last="Bakhireva">Ludmila Bakhireva</name><affiliation wicri:level="1"><mods:affiliation>University of California, San Diego, Department of Pediatrics, La Jolla, CA 92093, USA</mods:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>University of California, San Diego, Department of Pediatrics, La Jolla, CA 92093</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>E-mail: lbakhireva@ucsd.edu</mods:affiliation><country wicri:rule="url">États-Unis</country></affiliation></author><author><name sortKey="Chambers, Tina" sort="Chambers, Tina" uniqKey="Chambers T" first="Tina" last="Chambers">Tina Chambers</name><affiliation wicri:level="1"><mods:affiliation>University of California, San Diego, Department of Pediatrics, La Jolla, CA 92093, USA</mods:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>University of California, San Diego, Department of Pediatrics, La Jolla, CA 92093</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>E-mail: chchambers@ucsd.edu</mods:affiliation><country wicri:rule="url">États-Unis</country></affiliation></author><author><name sortKey="Deximo, Christina" sort="Deximo, Christina" uniqKey="Deximo C" first="Christina" last="Deximo">Christina Deximo</name><affiliation wicri:level="1"><mods:affiliation>Indiana University, University Information Technology Services, Indianapolis, IN 46202, USA</mods:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Indiana University, University Information Technology Services, Indianapolis, IN 46202</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>E-mail: cdeximo@indiana.edu</mods:affiliation><country wicri:rule="url">États-Unis</country></affiliation></author><author><name sortKey="Foroud, Tatiana" sort="Foroud, Tatiana" uniqKey="Foroud T" first="Tatiana" last="Foroud">Tatiana Foroud</name><affiliation wicri:level="1"><mods:affiliation>Indiana University School of Medicine, Department of Medical and Molecular Genetics, Indianapolis, IN 46202, USA</mods:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Indiana University School of Medicine, Department of Medical and Molecular Genetics, Indianapolis, IN 46202</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>E-mail: tforoud@iupui.edu</mods:affiliation><country wicri:rule="url">États-Unis</country></affiliation></author><author><name sortKey="Jacobson, Joseph" sort="Jacobson, Joseph" uniqKey="Jacobson J" first="Joseph" last="Jacobson">Joseph Jacobson</name><affiliation wicri:level="1"><mods:affiliation>Wayne State University, Department of Psychiatry and Behavioral Neurosciences, Detroit, Michigan, USA</mods:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Wayne State University, Department of Psychiatry and Behavioral Neurosciences, Detroit, Michigan</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>E-mail: joseph.jacobson@wayne.edu</mods:affiliation><country wicri:rule="url">États-Unis</country></affiliation></author><author><name sortKey="Jacobson, Sandra" sort="Jacobson, Sandra" uniqKey="Jacobson S" first="Sandra" last="Jacobson">Sandra Jacobson</name><affiliation wicri:level="1"><mods:affiliation>Wayne State University, Department of Psychiatry and Behavioral Neurosciences, Detroit, Michigan, USA</mods:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Wayne State University, Department of Psychiatry and Behavioral Neurosciences, Detroit, Michigan</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>E-mail: sandra.jacobson@wayne.edu</mods:affiliation><country wicri:rule="url">États-Unis</country></affiliation></author><author><name sortKey="Jones, Lyons" sort="Jones, Lyons" uniqKey="Jones L" first="Lyons" last="Jones">Lyons Jones</name><affiliation wicri:level="1"><mods:affiliation>University of California, San Diego, Department of Pediatrics, La Jolla, CA 92093, USA</mods:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>University of California, San Diego, Department of Pediatrics, La Jolla, CA 92093</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>E-mail: klyons@ucsd.edu</mods:affiliation><country wicri:rule="url">États-Unis</country></affiliation></author><author><name sortKey="Mattson, Sarah" sort="Mattson, Sarah" uniqKey="Mattson S" first="Sarah" last="Mattson">Sarah Mattson</name><affiliation wicri:level="1"><mods:affiliation>San Diego State University, Center for Behavioral Teratology, San Diego, CA 92120, USA</mods:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>San Diego State University, Center for Behavioral Teratology, San Diego, CA 92120</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>E-mail: smattson@sdsu.edu</mods:affiliation><country wicri:rule="url">États-Unis</country></affiliation></author><author><name sortKey="May, Philip" sort="May, Philip" uniqKey="May P" first="Philip" last="May">Philip May</name><affiliation wicri:level="1"><mods:affiliation>University of New Mexico, Center on Alcoholism, Substance Abuse & Addictions, Albuquerque, NM 87106, USA</mods:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>University of New Mexico, Center on Alcoholism, Substance Abuse & Addictions, Albuquerque, NM 87106</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>E-mail: pmay@unm.edu</mods:affiliation><country wicri:rule="url">États-Unis</country></affiliation></author><author><name sortKey="Moore, Elizabeth" sort="Moore, Elizabeth" uniqKey="Moore E" first="Elizabeth" last="Moore">Elizabeth Moore</name><affiliation wicri:level="1"><mods:affiliation>St. Vincent’s Hospital, Indianapolis, IN 46032, USA</mods:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>St. Vincent’s Hospital, Indianapolis, IN 46032</wicri:regionArea></affiliation><affiliation><mods:affiliation>E-mail: ESMoore@stvincent.org</mods:affiliation><wicri:noCountry code="no comma">E-mail: ESMoore@stvincent.org</wicri:noCountry></affiliation></author><author><name sortKey="Ogle, Kimberly" sort="Ogle, Kimberly" uniqKey="Ogle K" first="Kimberly" last="Ogle">Kimberly Ogle</name><affiliation wicri:level="1"><mods:affiliation>San Diego State University, Center for Behavioral Teratology, San Diego, CA 92120, USA</mods:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>San Diego State University, Center for Behavioral Teratology, San Diego, CA 92120</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>E-mail: kowens@sdsu.edu</mods:affiliation><country wicri:rule="url">États-Unis</country></affiliation></author><author><name sortKey="Riley, Edward" sort="Riley, Edward" uniqKey="Riley E" first="Edward" last="Riley">Edward Riley</name><affiliation wicri:level="1"><mods:affiliation>San Diego State University, Center for Behavioral Teratology, San Diego, CA 92120, USA</mods:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>San Diego State University, Center for Behavioral Teratology, San Diego, CA 92120</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>E-mail: eriley@sdsu.edu</mods:affiliation><country wicri:rule="url">États-Unis</country></affiliation></author><author><name sortKey="Robinson, Luther" sort="Robinson, Luther" uniqKey="Robinson L" first="Luther" last="Robinson">Luther Robinson</name><affiliation wicri:level="1"><mods:affiliation>State University of New York, Buffalo, New York 14260, USA</mods:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>State University of New York, Buffalo, New York 14260</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>E-mail: lutherkr@buffalo.edu</mods:affiliation><country wicri:rule="url">États-Unis</country></affiliation></author><author><name sortKey="Rogers, Jeffrey" sort="Rogers, Jeffrey" uniqKey="Rogers J" first="Jeffrey" last="Rogers">Jeffrey Rogers</name><affiliation wicri:level="1"><mods:affiliation>Indiana University, University Information Technology Services, Indianapolis, IN 46202, USA</mods:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Indiana University, University Information Technology Services, Indianapolis, IN 46202</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>E-mail: jlrogers@indiana.edu</mods:affiliation><country wicri:rule="url">États-Unis</country></affiliation></author><author><name sortKey="Streissguth, Ann" sort="Streissguth, Ann" uniqKey="Streissguth A" first="Ann" last="Streissguth">Ann Streissguth</name><affiliation wicri:level="1"><mods:affiliation>University of Washington Medical School, Department of Psychiatry and Behavioral Sciences, Fetal Alcohol and Drug Unit, Seattle, Washington 98195, USA</mods:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>University of Washington Medical School, Department of Psychiatry and Behavioral Sciences, Fetal Alcohol and Drug Unit, Seattle, Washington 98195</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>E-mail: astreiss@u.washington.edu</mods:affiliation><country wicri:rule="url">États-Unis</country></affiliation></author><author><name sortKey="Tavares, Michel" sort="Tavares, Michel" uniqKey="Tavares M" first="Michel" last="Tavares">Michel Tavares</name><affiliation wicri:level="1"><mods:affiliation>Indiana University, University Information Technology Services, Indianapolis, IN 46202, USA</mods:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Indiana University, University Information Technology Services, Indianapolis, IN 46202</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>E-mail: mtavares@indiana.edu</mods:affiliation><country wicri:rule="url">États-Unis</country></affiliation></author><author><name sortKey="Urbanski, Joseph" sort="Urbanski, Joseph" uniqKey="Urbanski J" first="Joseph" last="Urbanski">Joseph Urbanski</name><affiliation wicri:level="1"><mods:affiliation>Indiana University School of Medicine, Department of Medical and Molecular Genetics, Indianapolis, IN 46202, USA</mods:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Indiana University School of Medicine, Department of Medical and Molecular Genetics, Indianapolis, IN 46202</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>E-mail: joaurban@iupui.edu</mods:affiliation><country wicri:rule="url">États-Unis</country></affiliation></author><author><name sortKey="Yezerets, Helen" sort="Yezerets, Helen" uniqKey="Yezerets H" first="Helen" last="Yezerets">Helen Yezerets</name><affiliation wicri:level="1"><mods:affiliation>Indiana University, University Information Technology Services, Indianapolis, IN 46202, USA</mods:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Indiana University, University Information Technology Services, Indianapolis, IN 46202</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>E-mail: yyezert@indiana.edu</mods:affiliation><country wicri:rule="url">États-Unis</country></affiliation></author><author><name sortKey="Stewart, A" sort="Stewart, A" uniqKey="Stewart A" first="A." last="Stewart">A. Stewart</name><affiliation wicri:level="1"><mods:affiliation>Indiana University, Office of the Vice President for Information Technology, Bloomington, IN 47405, USA</mods:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Indiana University, Office of the Vice President for Information Technology, Bloomington, IN 47405</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>E-mail: yyezert@indiana.edu</mods:affiliation><country wicri:rule="url">États-Unis</country></affiliation><affiliation wicri:level="1"><mods:affiliation>E-mail: stewart@iu.edu</mods:affiliation><country wicri:rule="url">États-Unis</country></affiliation></author></analytic><monogr></monogr><series><title level="s">Lecture Notes in Computer Science</title><imprint><date>2007</date></imprint><idno type="ISSN">0302-9743</idno><idno type="eISSN">1611-3349</idno><idno type="ISSN">0302-9743</idno></series><idno type="istex">2A30315D2B3F630CFAFAB7BD600D6C9735C1C063</idno><idno type="DOI">10.1007/978-3-540-69968-2_4</idno><idno type="ChapterID">4</idno><idno type="ChapterID">Chap4</idno></biblStruct></sourceDesc><seriesStmt><idno type="ISSN">0302-9743</idno></seriesStmt></fileDesc><profileDesc><textClass></textClass><langUsage><language ident="en">en</language></langUsage></profileDesc></teiHeader><front><div type="abstract" xml:lang="en">Abstract : We implemented a distributed system for management of data for an international collaboration studying Fetal Alcohol Spectrum Disorders (FASD). Subject privacy was protected, researchers without dependable Internet access were accommodated, and researchers’ data were shared globally. Data dictionaries codified the nature of the data being integrated, data compliance was assured through multiple consistency checks, and recovery systems provided a secure, robust, persistent repository. The system enabled new types of science to be done, using distributed technologies that are expedient for current needs while taking useful steps towards integrating the system in a future grid-based cyberinfrastructure. The distributed architecture, verification steps, and data dictionaries suggest general strategies for researchers involved in collaborative studies, particularly where data must be de-identified before being shared. The system met both the collaboration’s needs and the NIH Roadmap’s goal of wide access to databases that are robust and adaptable to researchers’ needs.</div></front></TEI></record>Pour manipuler ce document sous Unix (Dilib)
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