PROJECT ABSTRACT SUMMARY
Utah’s measured autism spectrum disorder (ASD) prevalence rates have consistently fallen among the highest in the ADDM Network. The underlying reason for this trend is unclear, necessitating on-going ASD surveillance to address this public health concern. The Utah Registry of Autism and Developmental Disabilities (URADD) participated in the ADDM Network to identify 8-year-old children with ASD during surveillance years(SY)2002, 2008, 2010, and 2012, and in the Early ADDM Network to identify 4-year-old children with ASD in SY2010 and SY2012. URADD is proposing to return to the ADDM Network in SY2018 and SY2020 to conduct ASD surveillance in a three county Utah surveillance area for 4 and 8-year old children(Component A) and 16-year-old children (Component B). Participation in the ADDM Network enhances URADD’s capacity for detailed data collection to improve our understanding of ASD prevalence and disparities, predict future service needs, evaluate responses to public health efforts targeting early ASD identification,and examine variation in transition planning experienced by adolescents with ASD. URADD will focus on accomplishing multiple outcomes during SY2018 and SY2020 including 1) Improved understanding of ASD, including trends and disparities in ASD prevalence over time and by demographic factors, 2) Strengthened ASD surveillance among 4-year-old children, 3) Improved understanding of differences in ASD characteristics by age, 4) Stronger relationships between recipient and partners/data sources, 5) Increased dissemination of ADDM data 6) Improved reliability and efficiency of ADDM surveillance, and 7) Improved policies and plans that address ASD research agendas and services for children with ASD. To accomplish these outcomes, UT-ADDM will employ ADDM/MADDSP methodologies and case definitions for all surveillance-related activities for SY2018 and SY2020. URADD is the agency tasked under the authority and direction of the Utah Department of Health to measure an
d monitor the prevalence and associated features of ASD for public health purposes. Data sharing between health and education sources with URADD is mandated by the Utah legislature under public health reporting rule R398-10-1. UT-ADDM will conduct two-site specific analysis related to ADDM outcomes. First, a cohort approach will be applied to administrative data to estimate ASD prevalence, cumulative incidence and incidence rates there by elucidating our understanding of trends in ASD prevalence across age and birth cohorts. Second,differences in characteristics between males and females with ASD at different ages will be addressed, which will provide insight into factors driving disparities in ASD prevalence between males and females. Efforts to maintain and strengthen our collaborative relationships include 1) annual stakeholder meetings, 2) participation in ADDM calls and workgroups, 3) taking leadership roles in local health and community groups, and 4) providing trainings/presentations for community stakeholders.Finally, UT-ADDM will implement a rigorous evaluation and performance measurement plan that will ensure program implementation and improvement, demonstrate UT-ADDM’s achievement of program outputs and outcomes, provide input on potential changes to ADDM Network methodology, and assess the effectiveness of outreach strategies.