@article{48839dd5236144ec85379fce1a6204c7,
title = "Large databases for pediatric research on children with autism spectrum disorder",
abstract = "Objective: This article reviews the data available in 3 large databases for use in conducting studies of children with autism spectrum disorder (ASD). Methods: The article describes the data structure, data elements, and strengths and weaknesses of the 3 data sets. Results: Each of the 3 data sets, the Interactive Autism Network (IAN), the Autism Treatment Network (ATN), and PEDSnet have large cohorts of children with ASD. IAN has strengths in patient-reported measures, ATN in clinical characterization, and PEDSnet in health care encounters and electronic medical record data. Conclusion: The data sets described here have potential for further studies that could help improve the care and well-being of children with ASD and their families.",
keywords = "Autism, Database, Epidemilogy",
author = "Kuhlthau, {Karen A.} and Bailey, {L. Charles} and Baer, {Briella L.} and Coury, {Daniel L.} and Law, {J. Kiely} and Murray, {Donna S.} and Hanieh Razzaghi and Forrest, {Christopher B.} and Lipkin, {Paul H.}",
note = "Funding Information: IAN was founded in 2006 by physician-parents of a child with autism, with an aim to accelerate autism research by engaging families as critical stakeholders in all steps of the research process. IAN is a family-centered research network, enrolling children and adults with ASD along with parents and siblings. Current enrollment is 55,000 participants, including 14,500 children (1.5% of the US population of children with ASD) and 7500 adults with ASD. Launched with grant funding from Autism Speaks and the National Institutes of Mental Health, IAN is currently a partnership project of Kennedy Krieger Institute and the Simons Foundation. It receives additional support from the Patient-Centered Outcomes Research Institute (PCORI). Funding Information: IAN Acknowledgments: IAN is a partnership project of the Kennedy Krieger Institute and the Simons Foundation. IAN is also partially supported by the Patient-Centered Outcomes Research Institute Publisher Copyright: Copyright {\textcopyright} 2018 Wolters Kluwer Health, Inc.",
year = "2018",
doi = "10.1097/DBP.0000000000000534",
language = "English (US)",
volume = "39",
pages = "168--176",
journal = "Journal of Developmental and Behavioral Pediatrics",
issn = "0196-206X",
publisher = "Lippincott Williams and Wilkins",
number = "2",
}