Project: The Informatics Core for the Collaborative Initiative on Fetal Alcohol Spectrum Disorders
Primary UITS contact: Andy Arenson
Last update: April 17, 2009
Description: The Collaborative Initiative on Fetal Alcohol Spectrum Disorders (CIFASD) is an international group of researchers working together to find diagnoses, preventions, and treatments for a range of disorders related to prenatal alcohol consumption. This international collaboration is necessary to bring together the number of patients needed to understand the distinctions in different disorders and how those different disorders affect different demographics. This collaboration also brings together experts who are setting standards for the field and brings together innovative technologies and approaches so that they can be more widely evaluated and deployed.
The role of the Informatics Core is to facilitate data sharing through the creation of standards for data integration and the development and deployment of software tools for data entry, data centralization, and data analysis.
For more information, see the CIFASD home page.
Outcome and benefits: The Informatics Core has led the creation of a series of data standards and developed the software required to effectively collect and share such data. This includes the creation of the CIFASD Central Repository, a web-based database designed to help fulfill the NIH Roadmap goal of "wide access to technologies, databases, and other scientific resources that are more sensitive, more robust, and more easily adaptable to researchers' individual needs".
The Informatics Core has produced one paper and plans to publish the data integration standards being developed by the collaboration:
Arenson A.D., Bakhireva L., Chambers T., Deximo C., Foroud T., Jacobson J., Jacobson S., Jones K.L., Mattson S., May P., Moore E., Ogle K., Riley E., Robinson L., Rogers J., Streissguth A., Tavares M., Urbanski J., Yezerets H., Stewart C.A. Implementation of a Distributed Architecture for Managing Collection and Dissemination of Data for Fetal Alcohol Spectrum Disorders Research. GCCB 2006, LNBI 4360. pp 33-44. March, 2007.
Software delivery: The following list shows the most recent software development goals for the Informatics Core and their current status:
- Upgrade of the Dysmorphology Input tool Completed
- Creation of the Neurobehavior phase II Input Tool Completed
- Expansion of the Central Repository to accommodate Neurobehavior phase II data Completed
- Creation of the Demographics Input Tool Completed
- Expansion of the Central Repository to accommodate Demographics data
- Upgrade of the EEAC Input tool In development
- Expansion of the Infant Neurobehavior Input Tool In development
- Expansion of the Central Repository to accommodate Infant Neurobehavior data Not started
- Upgrade of the Followup/Outcome Input Tool Not started
Client impact: The following Indiana University researchers are directly or indirectly supported by this project:
- Shiaofen Fang, Department of Computer Science, IUPUI
- Tatiana Foroud, Department of Medical and Molecular Genetics, IU School of Medicine
- Charles Goodlett, Department of Psychology, IUPUI
- Jeffrey Huang, Department of Computer Science, IUPUI
- Elizabeth Moore, Department of Anthropology, IUPUI
- Richard Ward, Department of Anthropology, IUPUI
- Feng Zhou, Department of Anatomy and Cell Biology, IU School of Medicine
Project sponsor: Bill Barnett, Senior Manager for Life Sciences, Research Technologies, Pervasive Technology Institute
Project team:
- Andy Arenson
- Bill Barnett
- Craig Stewart
- Michel Tavares
- Helen Yezerets
Partner sites:
- Duke University
- Emory University
- Harvard Medical School
- Massachusetts General Hospital
- Moscow Regional Institute of Obstetrics and Gynecology
- Rivne Regional Diagnostic Center/Omni Center
- Russian Academy of Science
- Russian Federation National Research Center on Addictions
- San Diego State University
- Stanford University
- State University of New York at Buffalo
- Texas A&M University
- University of Cape Town
- University of California, Davis
- University of California, Los Angeles
- University of California, San Diego
- University of Nebraska
- University of New Mexico
- University of North Carolina at Chapel Hill
- University of South Alabama
- VA Boston Healthcare System
Additional information
- PI: Bill Barnett
-
Funding agency and grants:
- NIH/NIAAA 1 U24 AA014818-01; September 30, 2003-August 31, 2007
- NIH/NIAAA 2 U24 AA014818-04; September 30, 2007-July 31, 2012
- Funding to UITS: $1,193,410
- Total funding to IU related to this project: $1,319,161
