The utah registry of autism and developmental disabilities: enhancing public health surveillance of autism spectrum disorder in utah through the autism and developmental disabilities monitoring (addm)…

The utah registry of autism and developmental disabilities: enhancing public health surveillance of autism spectrum disorder in utah through the autism and developmental disabilities monitoring (addm) - the utah registry of autism and developmental disabilities (uradd) has participated in the addm network in study years (SY) 2002, 2008, 2010, 2012, 2018 and 2020. ASD prevalence in utah has increased considerable over the past 16 years from 7.5 ASD cases identified per 1,000 8-year-old children in 2002 to 21.5 ASD cases identified per 1,000 8-year-old children in 2018. Despite increases in utah's ASD prevalence, which suggest improved community awareness, disparities in ASD prevalence remain by ethnicity, SEX, age, and socioeconomic status. Given changes in ASD prevalence and persistent disparities overtime, the utah addm network site (UT-addm) remains essential for providing important data to utah ASD stakeholders. Uradd is requesting to continue its participation in the addm network in sys 2022 and 2024 to conduct ASD surveillance in a contiguous 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 improve our understanding of characteristics among adolescents with ASD. Uradd will focus on accomplishing multiple short-term outcomes during SY2022 and SY2024 including 1) improved comprehensive collection of multi-source data to estimate ASD prevalence and monitor progress in early identification of ASD among 4- and 8-year-old children, 2) improved comprehensive collection of multi-source data to describe characteristics of 16-year-olds with ASD, 3) enhanced partnerships with and dissemination of data to community stakeholders, and 4) improved reliability and efficiency of addm network surveillance. To accomplish these outcomes, UT-addm will employ addm network methodologies and case definitions for all surveillance-r elated activities for SY2022 and SY2024. Uradd is the agency tasked under the authority and direction of the utah department of health and human services (dhhs) to measure and 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. For SY2022 and SY2024, additional data sharing agreements are in place to access early intervention records as well as records from ABS kids, an applied behavioral analysis provider. For component b, UT-addm recently partnered with the dhhs's division of services for persons with disabilities to expand its screening and abstraction activities. In addition, UT-addm will engage with the statewide collaborative on post-secondary transition of students with disabilities in a pilot study to examine the potential to link UT-addm data with data from the utah state board of education and vocational rehab to examine transition planning among 16-year-olds. Efforts to maintain and strengthen our collaborative relationships include 1) a collaboration with learn the signs act early, 2) annual stakeholder meetings, 3) participation in addm calls and workgroups, 4) maintaining a UT-addm/uradd website, and 5) holding community awareness events focused on addressing disparities. 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.