Details and Information
Areas of Focus: Autism spectrum disorder (ASD)
Population Characteristics: All
Organization: Kennedy Krieger Institute
Contact: [email protected]
Co-Principal Investigator: Paul H. Lipkin, MD
The Interactive Autism Network (IAN) is a community of families and individuals with ASD, working alongside researchers and clinicians to accomplish a shared mission to improve the lives of individuals with ASD. Founded in 2006 by two physician-researcher-parents, IAN accelerates ASD research by engaging the autism community in all aspects of the research process. Via a secure, online portal (www.IANresearch.org), IAN participants provide important information about their health and well-being, treatments and services, and every day challenges and concerns. This information is used by ASD researchers to better understand autism and to identify the research priorities and unmet needs of those living with the disorder. IAN also facilitates research by matching families with local and national research initiatives. Currently, 55,000 individuals have joined IAN, including 7,000 adults and 15,000 children with ASD and other eligible family members (parents and siblings) from all regions of the US. IAN shares the results of research made possible by its participants and those in other autism research projects via a popular and respected public website (www.IANcommunity.org), which logs over 1 million visits and 10 million page views annually. IAN continues to expand its mission by collaborating with autism advocacy groups, community organizations, and other research networks. As a PCORnet participant, IAN is partnering with other networks to facilitate the integration of patient-report and electronic health record data to pilot mobile technologies to coordinate clinical care and research; and to identify and share strategies that maximize community engagement and transform the research process.
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