California is the largest state in the US, with a population exceeding 37 million and a gross domestic product that is not only the highest in the country but is the 5th largest in the world. San Diego, the southernmost major city within the state, contains rich geographic, racial and ethnic diversity. In this application to conduct Component A of the CDC-RFA-DD19-1901, the University of California San Diego’s (UCSD) Autism Center of Excellence proposes to further develop population-based, multiple-source, surveillance programs for ASD within this unique region. To achieve this objective, the Center will leverage our extensive relationships in San Diego, including those with California’s Department of Developmental Services (known as “Regional Center”), school districts (i.e., San Diego Unified, Chula Vista, and La Mesa), medical facilities, research centers, early intervention treatment providers, and autism community partners such as the National Foundation for Autism Research. As evidenced by the long list of memorandums of understanding (MOUs) included in this application, all have enthusiastically agreed to support the mission of the ADDM Network. Our unique surveillance region, just a few miles from the Mexico border, would contain the highest density of children of Hispanic descent -- 51% -- relative to all current ADDM Network sites1. Using ADDM methodology modeled after Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP), Investigators will address a range of public health issues as they relate to ASD including determining: (1) prevalence rates within a designated surveillance area that includes three school districts containing more than 15,000 children in both the four-year and eight-year old cohorts (with opportunity for expansion); (2) differences in prevalence among racial and ethnic groups; (3) intellectual functioning; (4), and age at first diagnostic evaluation. The P.I., Dr. Karen Pierce, spearheaded
an ASD early detection program ~10 years ago in San Diego County that revolves around general population-based screening at well baby check-ups through the creation of a pediatrician network using a broad band screening tool, the CSBS2. To date, her program has screened > 90,000 toddlers in San Diego at 12, 18, and 24 month well baby visits and her pediatrician network has expanded to include almost all major regional medical groups totaling 170 pediatricians. The relative wealth of services and highly successful early detection program in San Diego offers the opportunity to examine how such rich and intensive services might impact age at evaluation and diagnosis, as well as overall prevalence estimates. The performance of our surveillance program will be closely tracked using 8 key measures reported at weekly team meetings including: (1) number of health records in tracking system; (2) number of health records abstracted; (3) number of education records in tracking; (4) number of education records abstracted; (5) percent of records with abstraction edits; (6) percent of records assigned for clinician review within 2-weeks of availability; (7) percent of records with clinician batch edits; and (8) number of clinician reviews completed. Expected immediate outcomes include improved understanding of ASD; strengthened surveillance among 4-year olds with ASD; improved understanding of differences in ASD characteristics by age; strengthened relationships between the UCSD Autism Center of Excellence and community partners; increased dissemination of ADDM data; and improved reliability and efficiency of ADDM surveillance. We are confident that the overall long-term outcome of our participation will be improved policies, plans and services for children with ASD not only in our area but in the US as a whole.
