Browsing by Author "Jacobson, Sandra"

Filter results by typing the first few letters
Now showing 1 - 1 of 1
  • Thumbnail Image
    Item
    Implementation of a Distributed Architecture for Managing Collection and Dissemination of Data for Fetal Alcohol Spectrum Disorder
    (Springer Lecture Notes in Computer Science, 2007-01-21) May, Philip; Mattson, Sarah; Foroud, Tatiana; Deximo, Christina; Jones, Kenneth L.; Jacobson, Sandra; Chambers, Tina; Bakhireva, Ludmila; Arenson, Andrew; Stewart, Craig A.; Tavares, Michel; Streissguth, Ann; Yezerets, Helen; Urbanski, Joseph; Riley, Edward; Ogle, Kimberly; Rogers, Jeffrey; Robinson, Luther; Moore, Elizabeth
    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.