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Large Databases for Pediatric Research on Children with Autism Spectrum Disorder

Authors :
Hanieh Razzaghi
Daniel L. Coury
L. Charles Bailey
J. Kiely Law
Paul H. Lipkin
Christopher B. Forrest
Donna S. Murray
Briella L. Baer
Karen Kuhlthau
Source :
Journal of developmental and behavioral pediatrics : JDBP. 39(2)
Publication Year :
2017

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.

Details

ISSN :
15367312
Volume :
39
Issue :
2
Database :
OpenAIRE
Journal :
Journal of developmental and behavioral pediatrics : JDBP
Accession number :
edsair.doi.dedup.....dc5d313e23746cc0a8b4c41a6426cb2c