Data Coordinating Center for Autism & Other Disabilities

Michigan State University, East Lansing MI

Investigators

Linked publications & trials

Abstract

This proposal builds upon activities and accomplishments funded under Cooperative Agreement U10DD000007 to establish at Michigan State University (MSU) a Data Coordinating Center (DCC) for the Centers for Autism and Developmental Disabilities Research and Epidemiology (CADDRE), a research program funded by the Centers for Disease Control and Prevention. Currently, CADDRE activity is focused primarily on the Study to Explore Early Development (SEED), a multi-site collaborative study to help identify factors that may put children at risk for autism spectrum disorder (ASD). The DCC was established to develop and host the CADDRE Information System (CIS), a centralized, World Wide Web-based, automated-workflow system that supports all of the activities for CADDRE SEED, including the collection and storage of all data in a secure database. SEED is being executed from the six sites of CADDRE, which include Johns Hopkins University, Kaiser Foundation Research Institute, the University of Pennsylvania, the Colorado Department of Public Health and Environment, and the University of North Carolina at Chapel Hill. The National Center on Birth Defects and Developmental Disabilities (NCBDDD) of the Centers for Disease Control (CDC) serves as the sixth CADDRE site. The areas of DCC support to SEED include ongoing data collection and follow-up, data quality control, data analyses and interpretation, and preparing peer-reviewed presentations and publications. The Primary Aims of the CADDRE DCC are: (1) Assure Data Quality and Security;(2) Complete Ongoing Development and Engineer New Functionality;(3) Develop and Execute Medical Coding Protocols;(4) Provide System and Application Maintenance and Data Security;(5) Maintain Adequate Staffing Levels and Capabilities;(6) Support Study Sites and Users;(7) Support Data Sharing and Data Availability Requirements;(8) Support Data Visualization;and (9) Support Communication Requirements and Provide Intellectual Contributions. The next three years of the project will see a shift in DCC activities marked by a reduction in database development and an increase in data management, medical coding, and support of study workgroups through activities such as consultation on data matters, and hosting two terabytes of dsymorphology photos to be viewed and scored by experts from several sites around the country. DCC medical coders, augmented by proprietary MSU "Auto-Coding" technology, have initiated a medical coding protocol to code conditions, procedures, and medications found in approximately 1,000,000 verbatim text codes originating from CIS fields and medical record abstractions. By the end of the new three-year funding cycle, enrollment should be completed and study emphasis will move to the completion of data entry and the preparation of datasets for analyses addressing study hypotheses regarding factors that increase children's risk for ASD.