Implementation of a Distributed Architecture for Managing Collection and Dissemination of Data for Fetal Alcohol Spectrum Disorders Research
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.
KeywordsDistributed Computing Repository Data Dictionary Fetal Alcohol Spectrum Disorders
Unable to display preview. Download preview PDF.
- 4.Hartswood, M., Jirotka, M., Slack, R., Voss, A., Lloyd, S.: Working IT out in e-Science: Experiences of requirements capture in a Healthgrid project. In: Proceedings of Healthgrid, pp. 198–209. IOS Press, ISBM (2005)Google Scholar
- 5.Mattes, W.B., Pettit, S.D., Sansone, S., Bushel, P.R., Waters, M.D.: Database Development in Toxicogenomics: Issues and Efforts. Environmental Health Perspectives 112, 495–505 (2004)Google Scholar
- 6.Stein, H.D., Nadkarni, P., Erdos, J., Miller, P.L.: Exploring the Degree of Concordance of Coded and Textual Data in Answering Clinical Queries from a Clinical Data Repository. Am. Med. Inform Assoc 7, 42–54 (2000)Google Scholar
- 8.CAS basics (2006) http://uits.iu.edu/scripts/ose.cgi?akui.def.help Google Scholar
- 9.The Indiana University Massive Data Storage System Service (2006) http://storage.iu.edu/ mdss.shtmlGoogle Scholar
- 10.High Performance Storage System (2006) http://www.hpss-collaboration.org/hpss/index.jspGoogle Scholar
- 11.Indiana’s Optical Fiber Initiative – I-Light (2006) http://www.i-light.iupui.eduGoogle Scholar
- 12.May, P.A., Gossage, J.P., White-Country, M., Goodhart, K., Decoteau, S., Trujillo, P.M., Kalberg, W.O., Viljoen, D.L., Hoyme, H.E.: Alcohol Consumption and Other Maternal Risk Factors for Fetal Alcohol Syndrome among Three Distinct Samples of Women before, during, and after Pregnancy: The Risk Is Relative. Am. J. Med. Genet. C. Semin. Med. Genet. 127, 10–20 (2004)CrossRefGoogle Scholar
- 13.Hoyme, E.H., Fagerlund, Å., Ervalahti, N., Loimu, L., Autti-Rämö, I.: Fetal alcohol spectrum disorders in Finland: Clinical delineation of 77 older children and adolescents and comparison with affected North American children. Presented at the Western Society for Pediatric Research (February 2005) Google Scholar
- 14.Flury-Wetherill, L., Foroud, T., Rogers, J., Moore, E.: The CIFASD Consortium, Fetal Alcohol Syndrome and 3-D facial imaging: Differences among three ethnic groups. Poster presentation at 29th Annual Research Society on Alcoholism Scientific Meeting, Baltimore, MD (June 23-29, 2006) Google Scholar
- 15.TeraGrid, http://teragrid.org (2006)Google Scholar
- 16.NIH Roadmap for medical research – Overview of the NIH Roadmap, http:// nihroadmap.nih.gov/overview.asp (2006)Google Scholar