Being aWARE: engaging the community in development of a Web-based tool for Autism Research

Authors

  • A Singh
  • CP Lawler
  • AC Haugen
  • AE Garton
  • VR Walker
  • J Rochester
  • R Blain
  • KE Pelch
  • A Hannani
  • J Frye
  • W Tracy
  • AA Rooney

Abstract

Over the last two decades, the goal of understanding the role of nongenetic factors in autism spectrum disorder (ASD) has resulted in a large and heterogeneous body of research on potential associations with environmental chemical exposures, diet, nutrition, lifestyle, social factors, and maternal medical conditions. The range and diversity of these studies present a challenge to researchers and the public to understanding the state of the science or effectively using available research to inform decisions. The goal of turning data on ASD into knowledge motivated the development of a Web-based tool for Autism Research and the Environment (aWARE) using a systematic evidence map (SEM) approach to comprehensively identify, characterize, and make this information accessible. SEMs use systematic review methodology, a rigorous approach to organize and present data in an interactive visual format as an aid to synthesis and understanding. Our workflow leverages Artificial Intelligence (AI) methods for extracting relevant details from each study (e.g., exposure, model, measure of ASD-related outcome). Equally or perhaps more important than the technical approach, we have engaged the broad autism community, including autistic individuals and families, advocacy groups, clinicians, and researchers throughout the project. We will share a beta-version of the tool at the aWARE workshop scheduled for September 5-6, 2024 (https://www.niehs.nih.gov/news/events/aware). The workshop is designed to gather feedback from the autism community, ensuring the creation of a valuable resource that resonates with diverse perspectives within the community. This presentation will outline the methods, show the beta-aWARE tool, and present preliminary results of the workshop.

Scientific Focus Area: Epidemiology

This page was last updated on Tuesday, August 6, 2024

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