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Implementation of a Distributed Architecture for Managing Collection and Dissemination of Data for Fetal Alcohol Spectrum Disorders Research

  • Andrew Arenson
  • Ludmila Bakhireva
  • Tina Chambers
  • Christina Deximo
  • Tatiana Foroud
  • Joseph Jacobson
  • Sandra Jacobson
  • Kenneth Lyons Jones
  • Sarah Mattson
  • Philip May
  • Elizabeth Moore
  • Kimberly Ogle
  • Edward Riley
  • Luther Robinson
  • Jeffrey Rogers
  • Ann Streissguth
  • Michel Tavares
  • Joseph Urbanski
  • Helen Yezerets
  • Craig A. Stewart
Part of the Lecture Notes in Computer Science book series (LNCS, volume 4360)

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.

Keywords

Distributed Computing Repository Data Dictionary Fetal Alcohol Spectrum Disorders 

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Copyright information

© Springer Berlin Heidelberg 2007

Authors and Affiliations

  • Andrew Arenson
    • 1
  • Ludmila Bakhireva
    • 2
  • Tina Chambers
    • 2
  • Christina Deximo
    • 1
  • Tatiana Foroud
    • 3
  • Joseph Jacobson
    • 4
  • Sandra Jacobson
    • 4
  • Kenneth Lyons Jones
    • 2
  • Sarah Mattson
    • 5
  • Philip May
    • 6
  • Elizabeth Moore
    • 7
  • Kimberly Ogle
    • 5
  • Edward Riley
    • 5
  • Luther Robinson
    • 8
  • Jeffrey Rogers
    • 1
  • Ann Streissguth
    • 9
  • Michel Tavares
    • 1
  • Joseph Urbanski
    • 3
  • Helen Yezerets
    • 1
  • Craig A. Stewart
    • 10
  1. 1.Indiana University, University Information Technology Services, Indianapolis, IN 46202USA
  2. 2.University of California, San Diego, Department of Pediatrics, La Jolla, CA 92093USA
  3. 3.Indiana University School of Medicine, Department of Medical and Molecular Genetics, Indianapolis, IN 46202USA
  4. 4.Wayne State University, Department of Psychiatry and Behavioral Neurosciences, Detroit, MichiganUSA
  5. 5.San Diego State University, Center for Behavioral Teratology, San Diego, CA 92120USA
  6. 6.University of New Mexico, Center on Alcoholism, Substance Abuse & Addictions, Albuquerque, NM 87106USA
  7. 7.St. Vincent’s Hospital, Indianapolis, IN 46032USA
  8. 8.State University of New York, Buffalo, New York 14260USA
  9. 9.University of Washington Medical School, Department of Psychiatry and Behavioral Sciences, Fetal Alcohol and Drug Unit, Seattle, Washington 98195USA
  10. 10.Indiana University, Office of the Vice President for Information Technology, Bloomington, IN 47405USA

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