Monday, April 29, 2024
4/29/2024
Project Abstract-Component A Indiana state statute requires that doctors, hospitals, and other healthcare providers notify the Indiana Birth Defects and Problems Registry (IBDPR) when a child is identified with a birth defect through standard ICD-10 CM codes. As of 2014, autism spectrum disorders (ASDs) are required to be reported to the IBDPR at any age and abstracted per current protocol up to age eight. Based on data collected through the Autism and Developmental Disabilities Monitoring (ADDM) Network the CDC estimates that in 2014, 16.8 per 1,000 eight-year-old children were diagnosed with ASD in comparison to the IBDPR estimate in 2014 of 9 per 1,000 children aged zero to eight. In 2016, 18.5 per 1,000 children were estimated to be diagnosed with ASD in comparison to the IBDPR estimate in 2016 of 2.8 per 1,000 children diagnosed with ASD. The most recent data from the ADDM Network was in 2018, which estimated about 23.0 per 1,000 children were diagnosed with ASD. In comparison, the IBDPR estimated 19.1 per 1,000 children in 2018. These figures show the drastic difference in ASD prevalence rates between the ADDM Network and the IBDPR. Compared to CDC data, children with ASDs living in Indiana have historically been significantly underreported. Additional funding is necessary to develop and enhance the capacity of the program to implement a population-based, comprehensive, multi-source data surveillance program for ASD in Indiana. The purpose of the project is to expand ASD surveillance throughout Indiana in children ages 4-and-8-years old, develop partnerships with key stakeholders, and create and disseminate community data reports and resources. Comprehensive collection of multi-source data obtained through this project will be shared with the ADDM Network to estimate ASD prevalence and monitor progress in early identification of ASD among 4-and 8-year-old children. The project will use standardized ADDM Network methodology to conduct surveillance, which will be a smooth transition into current IBDPR operational practices. The short-term outcome of the project is to enhance partnerships with and disseminate data to community stakeholders. This will lead to an increase in the use of ADDM Network data by stakeholders to link children with ASD to services. The IBDPR program has defined a surveillance area located in the central and northeast regions of Indiana. This surveillance area was chosen to capture a diverse area centrally located in the city of Indianapolis (Marion County). From there, the surveillance area moves toward the northeast region of Indiana. IDOH will be utilized as the primary health data source for surveillance. IBDPR has partnered with the Indiana Health Information Exchange (IHIE), Indiana Department of Education (IDOE), and Indiana First Steps program, which will each be used as additional data sources. Other partners include Indiana Family Social Services Administration (Medicaid). Informing community partners directly supports surveillance activities by ensuring continuous access to community data sources and fostering use of ADDM Network data for public health practice. Community education and outreach will also be critical to the overall success of this project. Engaging partners and stakeholders in community education and outreach during the project period will encourage new and expanded partnerships and increase awareness of ADDM Network activities. The long-term outcomes of this project are to improve policies and plans that address ASD research agendas and services for children with ASD, as well as improving reliability and efficiency of ADDM Network surveillance. This long-term goal will be achieved through comprehensive data collection, data sharing, program evaluation and continuous collaboration with key stakeholders throughout the entirety of the project.
HHS’ Tracking Accountability in Government Grants System (TAGGS) website provides access to detailed descriptions of grants, loans, aggregated direct payments and other types of financial assistance awarded by the HHS Operating Divisions (OPDIVs) and the Office of the Secretary Staff Divisions (STAFFDIVs).
