Implementation of a Distributed Architecture for Managing Collection and Dissemination of Data for Fetal Alcohol Spectrum Disorders Research
Identifieur interne : 000F08 ( Main/Exploration ); précédent : 000F07; suivant : 000F09Implementation 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.
Url:
DOI: 10.1007/978-3-540-69968-2_4
Affiliations:
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Research</title><author><name sortKey="Arenson, Andrew" sort="Arenson, Andrew" uniqKey="Arenson A" first="Andrew" last="Arenson">Andrew Arenson</name><affiliation wicri:level="2"><country xml:lang="fr">États-Unis</country><wicri:regionArea>Indiana University, University Information Technology Services, Indianapolis, IN 46202</wicri:regionArea><placeName><region type="state">Indiana</region></placeName></affiliation><affiliation wicri:level="1"><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="2"><country xml:lang="fr">États-Unis</country><wicri:regionArea>University of California, San Diego, Department of Pediatrics, La Jolla, CA 92093</wicri:regionArea><placeName><region type="state">Californie</region></placeName></affiliation><affiliation wicri:level="1"><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="2"><country xml:lang="fr">États-Unis</country><wicri:regionArea>University of California, San Diego, Department of Pediatrics, La Jolla, CA 92093</wicri:regionArea><placeName><region type="state">Californie</region></placeName></affiliation><affiliation wicri:level="1"><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="2"><country xml:lang="fr">États-Unis</country><wicri:regionArea>Indiana University, University Information Technology Services, Indianapolis, IN 46202</wicri:regionArea><placeName><region type="state">Indiana</region></placeName></affiliation><affiliation wicri:level="1"><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="2"><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><placeName><region type="state">Indiana</region></placeName></affiliation><affiliation wicri:level="1"><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="2"><country xml:lang="fr">États-Unis</country><wicri:regionArea>Wayne State University, Department of Psychiatry and Behavioral Neurosciences, Detroit, Michigan</wicri:regionArea><placeName><region type="state">Michigan</region></placeName></affiliation><affiliation wicri:level="1"><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="2"><country xml:lang="fr">États-Unis</country><wicri:regionArea>Wayne State University, Department of Psychiatry and Behavioral Neurosciences, Detroit, Michigan</wicri:regionArea><placeName><region type="state">Michigan</region></placeName></affiliation><affiliation wicri:level="1"><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="2"><country xml:lang="fr">États-Unis</country><wicri:regionArea>University of California, San Diego, Department of Pediatrics, La Jolla, CA 92093</wicri:regionArea><placeName><region type="state">Californie</region></placeName></affiliation><affiliation wicri:level="1"><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="2"><country xml:lang="fr">États-Unis</country><wicri:regionArea>San Diego State University, Center for Behavioral Teratology, San Diego, CA 92120</wicri:regionArea><placeName><region type="state">Californie</region></placeName></affiliation><affiliation wicri:level="1"><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="2"><country xml:lang="fr">États-Unis</country><wicri:regionArea>University of New Mexico, Center on Alcoholism, Substance Abuse & Addictions, Albuquerque, NM 87106</wicri:regionArea><placeName><region type="state">Nouveau-Mexique</region></placeName></affiliation><affiliation wicri:level="1"><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="2"><country xml:lang="fr">États-Unis</country><wicri:regionArea>St. Vincent’s Hospital, Indianapolis, IN 46032</wicri:regionArea><placeName><region type="state">Indiana</region></placeName></affiliation><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="2"><country xml:lang="fr">États-Unis</country><wicri:regionArea>San Diego State University, Center for Behavioral Teratology, San Diego, CA 92120</wicri:regionArea><placeName><region type="state">Californie</region></placeName></affiliation><affiliation wicri:level="1"><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="2"><country xml:lang="fr">États-Unis</country><wicri:regionArea>San Diego State University, Center for Behavioral Teratology, San Diego, CA 92120</wicri:regionArea><placeName><region type="state">Californie</region></placeName></affiliation><affiliation wicri:level="1"><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"><country xml:lang="fr">États-Unis</country><wicri:regionArea>State University of New York, Buffalo, New York 14260</wicri:regionArea><wicri:noRegion>New York 14260</wicri:noRegion></affiliation><affiliation wicri:level="1"><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="2"><country xml:lang="fr">États-Unis</country><wicri:regionArea>Indiana University, University Information Technology Services, Indianapolis, IN 46202</wicri:regionArea><placeName><region type="state">Indiana</region></placeName></affiliation><affiliation wicri:level="1"><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"><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><wicri:noRegion>Washington 98195</wicri:noRegion></affiliation><affiliation wicri:level="1"><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="2"><country xml:lang="fr">États-Unis</country><wicri:regionArea>Indiana University, University Information Technology Services, Indianapolis, IN 46202</wicri:regionArea><placeName><region type="state">Indiana</region></placeName></affiliation><affiliation wicri:level="1"><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="2"><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><placeName><region type="state">Indiana</region></placeName></affiliation><affiliation wicri:level="1"><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="2"><country xml:lang="fr">États-Unis</country><wicri:regionArea>Indiana University, University Information Technology Services, Indianapolis, IN 46202</wicri:regionArea><placeName><region type="state">Indiana</region></placeName></affiliation><affiliation wicri:level="1"><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="2"><country xml:lang="fr">États-Unis</country><wicri:regionArea>Indiana University, Office of the Vice President for Information Technology, Bloomington, IN 47405</wicri:regionArea><placeName><region type="state">Indiana</region></placeName></affiliation><affiliation wicri:level="1"><country wicri:rule="url">États-Unis</country></affiliation><affiliation wicri:level="1"><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><affiliations><list><country><li>États-Unis</li></country><region><li>Californie</li><li>Indiana</li><li>Michigan</li><li>Nouveau-Mexique</li></region></list><tree><country name="États-Unis"><region name="Indiana"><name sortKey="Arenson, Andrew" sort="Arenson, Andrew" uniqKey="Arenson A" first="Andrew" last="Arenson">Andrew Arenson</name></region><name sortKey="Arenson, Andrew" sort="Arenson, Andrew" uniqKey="Arenson A" first="Andrew" last="Arenson">Andrew Arenson</name><name sortKey="Bakhireva, Ludmila" sort="Bakhireva, Ludmila" uniqKey="Bakhireva L" first="Ludmila" last="Bakhireva">Ludmila Bakhireva</name><name sortKey="Bakhireva, Ludmila" sort="Bakhireva, Ludmila" uniqKey="Bakhireva L" first="Ludmila" last="Bakhireva">Ludmila Bakhireva</name><name sortKey="Chambers, Tina" sort="Chambers, Tina" uniqKey="Chambers T" first="Tina" last="Chambers">Tina Chambers</name><name sortKey="Chambers, Tina" sort="Chambers, Tina" uniqKey="Chambers T" first="Tina" last="Chambers">Tina Chambers</name><name sortKey="Deximo, Christina" sort="Deximo, Christina" uniqKey="Deximo C" first="Christina" last="Deximo">Christina Deximo</name><name sortKey="Deximo, Christina" sort="Deximo, Christina" uniqKey="Deximo C" first="Christina" last="Deximo">Christina Deximo</name><name sortKey="Foroud, Tatiana" sort="Foroud, Tatiana" uniqKey="Foroud T" first="Tatiana" last="Foroud">Tatiana Foroud</name><name sortKey="Foroud, Tatiana" sort="Foroud, Tatiana" uniqKey="Foroud T" first="Tatiana" last="Foroud">Tatiana Foroud</name><name sortKey="Jacobson, Joseph" sort="Jacobson, Joseph" uniqKey="Jacobson J" first="Joseph" last="Jacobson">Joseph Jacobson</name><name sortKey="Jacobson, Joseph" sort="Jacobson, Joseph" uniqKey="Jacobson J" first="Joseph" last="Jacobson">Joseph Jacobson</name><name sortKey="Jacobson, Sandra" sort="Jacobson, Sandra" uniqKey="Jacobson S" first="Sandra" last="Jacobson">Sandra Jacobson</name><name sortKey="Jacobson, Sandra" sort="Jacobson, Sandra" uniqKey="Jacobson S" first="Sandra" last="Jacobson">Sandra Jacobson</name><name sortKey="Jones, Lyons" sort="Jones, Lyons" uniqKey="Jones L" first="Lyons" last="Jones">Lyons Jones</name><name sortKey="Jones, Lyons" sort="Jones, Lyons" uniqKey="Jones L" first="Lyons" last="Jones">Lyons Jones</name><name sortKey="Mattson, Sarah" sort="Mattson, Sarah" uniqKey="Mattson S" first="Sarah" last="Mattson">Sarah Mattson</name><name sortKey="Mattson, Sarah" sort="Mattson, Sarah" uniqKey="Mattson S" first="Sarah" last="Mattson">Sarah Mattson</name><name sortKey="May, Philip" sort="May, Philip" uniqKey="May P" first="Philip" last="May">Philip May</name><name sortKey="May, Philip" sort="May, Philip" uniqKey="May P" first="Philip" last="May">Philip May</name><name sortKey="Moore, Elizabeth" sort="Moore, Elizabeth" uniqKey="Moore E" first="Elizabeth" last="Moore">Elizabeth Moore</name><name sortKey="Ogle, Kimberly" sort="Ogle, Kimberly" uniqKey="Ogle K" first="Kimberly" last="Ogle">Kimberly Ogle</name><name sortKey="Ogle, Kimberly" sort="Ogle, Kimberly" uniqKey="Ogle K" first="Kimberly" last="Ogle">Kimberly Ogle</name><name sortKey="Riley, Edward" sort="Riley, Edward" uniqKey="Riley E" first="Edward" last="Riley">Edward Riley</name><name sortKey="Riley, Edward" sort="Riley, Edward" uniqKey="Riley E" first="Edward" last="Riley">Edward Riley</name><name sortKey="Robinson, Luther" sort="Robinson, Luther" uniqKey="Robinson L" first="Luther" last="Robinson">Luther Robinson</name><name sortKey="Robinson, Luther" sort="Robinson, Luther" uniqKey="Robinson L" first="Luther" last="Robinson">Luther Robinson</name><name sortKey="Rogers, Jeffrey" sort="Rogers, Jeffrey" uniqKey="Rogers J" first="Jeffrey" last="Rogers">Jeffrey Rogers</name><name sortKey="Rogers, Jeffrey" sort="Rogers, Jeffrey" uniqKey="Rogers J" first="Jeffrey" last="Rogers">Jeffrey Rogers</name><name sortKey="Stewart, A" sort="Stewart, A" uniqKey="Stewart A" first="A." last="Stewart">A. Stewart</name><name sortKey="Stewart, A" sort="Stewart, A" uniqKey="Stewart A" first="A." last="Stewart">A. Stewart</name><name sortKey="Stewart, A" sort="Stewart, A" uniqKey="Stewart A" first="A." last="Stewart">A. Stewart</name><name sortKey="Streissguth, Ann" sort="Streissguth, Ann" uniqKey="Streissguth A" first="Ann" last="Streissguth">Ann Streissguth</name><name sortKey="Streissguth, Ann" sort="Streissguth, Ann" uniqKey="Streissguth A" first="Ann" last="Streissguth">Ann Streissguth</name><name sortKey="Tavares, Michel" sort="Tavares, Michel" uniqKey="Tavares M" first="Michel" last="Tavares">Michel Tavares</name><name sortKey="Tavares, Michel" sort="Tavares, Michel" uniqKey="Tavares M" first="Michel" last="Tavares">Michel Tavares</name><name sortKey="Urbanski, Joseph" sort="Urbanski, Joseph" uniqKey="Urbanski J" first="Joseph" last="Urbanski">Joseph Urbanski</name><name sortKey="Urbanski, Joseph" sort="Urbanski, Joseph" uniqKey="Urbanski J" first="Joseph" last="Urbanski">Joseph Urbanski</name><name sortKey="Yezerets, Helen" sort="Yezerets, Helen" uniqKey="Yezerets H" first="Helen" last="Yezerets">Helen Yezerets</name><name sortKey="Yezerets, Helen" sort="Yezerets, Helen" uniqKey="Yezerets H" first="Helen" last="Yezerets">Helen Yezerets</name></country></tree></affiliations></record>Pour manipuler ce document sous Unix (Dilib)
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