Leveraging national ASD data to advance early access to care & develop research and family capacity
Oregon Health & Science University
The Child and Adolescent Health Measurement Initiative will leverage its national Data Resource Center to provide easily accessible data on the prevalence of ASD and related data on screening, diagnosis, referral and intervention among those with ASD based on existing data from large national surveys. This data will be made available in numerous formats and for a variety of audiences, including families, providers, and state and national advocates. Expedited access to the data will help those in the ASD community to better understand the epidemiology of ASD and how policymakers, advocates and researchers can help to ameliorate the impacts of ASD in the U.S. Specifically, CAHMI will: 1) Research and create user friendly Learn About the Survey materials. This will be done iteratively with data analysis and evaluation in order to ensure proper characterization of data capacity and content. This also requires digestion and iterative confirmation (and modification perhaps) of CDC documentation of the Pathways data set. 2) Research, specify, code and test key constructed variables in partnership with end users to ensure relevance and value as well as consistency with other data sets including ASD (e.g. NSCH, MEPS, NHIS, NS-CSHCN). 3) Develop “ready to use” cleaned and coded datasets and codebooks to advance research and application of the Pathways Survey 4) Conceptualize integration of Pathways materials and data sets into the existing DRC Website platform and build core website pages and content required to disseminate the “learn about the survey” and data sets/codebooks. 5) Design, advertise and conduct a Webinar hosted with Autism Speaks to launch the national chartbook and web-based data resources available to date 6) Conceptualize integration of Pathways (alone or linked to NS-CSHCN as possible) into existing DRC data query system. 7) Build and design webpages and functions required to house core materials and allow for easy data set and materials access. 8) Create a national data query options integrated into the Data Resource Center 9) Write technical memo outlining the data strengths and weaknesses for consideration in future data collection.