This proposal builds upon activities and accomplishments funded under Cooperative AgreementU10DD000007 to establish at Michigan State University (MSU) a Data Coordinating Center (DCC) for theCenters for Autism and Developmental Disabilities Research and Epidemiology (CADDRE), a researchprogram funded by the Centers for Disease Control and Prevention. Currently, CADDRE activity is focusedprimarily on the Study to Explore Early Development (SEED), a multi-site collaborative study to help identifyfactors that may put children at risk for autism spectrum disorder (ASD). The DCC was established todevelop 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 collectionand storage of all data in a secure database. SEED is being executed from the six sites of CADDRE, whichinclude Johns Hopkins University, Kaiser Foundation Research Institute, the University of Pennsylvania, theColorado 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 DiseaseControl (CDC) serves as the sixth CADDRE site. The areas of DCC support to SEED include ongoing datacollection and follow-up, data quality control, data analyses and interpretation, and preparing peer-reviewedpresentations and publications. The Primary Aims of the CADDRE DCC are: (1) Assure Data Quality andSecurity; (2) Complete Ongoing Development and Engineer New Functionality; (3) Develop and ExecuteMedical Coding Protocols; (4) Provide System and Application Maintenance and Data Security; (5) MaintainAdequate Staffing Levels and Capabilities; (6) Support Study Sites and Users; (7) Support Data Sharingand Data Availability Requirements; (8) Support Data Visualization; and (9) Support CommunicationRequirements and Provide Intellectual Contributions. The next three years of the project will see a shift inDCC 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 sitesaround the country. DCC medical coders, augmented by proprietary MSU 'Auto-Coding' technology, haveinitiated a medical coding protocol to code conditions, procedures, and medications found in approximately1,000,000 verbatim text codes originating from CIS fields and medical record abstractions. By the end ofthe new three-year funding cycle, enrollment should be completed and study emphasis will move to thecompletion of data entry and the preparation of datasets for analyses addressing study hypothesesregarding factors that increase children's risk for ASD.
This proposal will continue support of the CADDRE Data Coordinating Center (DCC) at Michigan State University. The DCC provides data management and quality control services to facilitate CDC-sponsored research into the causes of autism, a serious disabling condition that has been estimated to occur in 1 in 150 children in the US. This support is targeted towards the Study to Explore Early Development (SEED), the largest study ever conducted designed to help identify factors that may put children at risk for autism.
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