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J Dev Behav Pediatr. 2018 Feb/Mar;39(2):168-176. doi: 10.1097/DBP.0000000000000534.

Large Databases for Pediatric Research on Children with Autism Spectrum Disorder.

Author information

1
Division of General Pediatrics, Department of Pediatrics, Massachusetts General Hospital and Harvard Medical School, Harvard University, Boston, MA.
2
Applied Clinical Research Center, Children's Hospital of Philadelphia and Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA.
3
Department of Medical Informatics, Kennedy Krieger Institute, Baltimore, MD.
4
Department of Pediatrics, The Ohio State University, Developmental and Behavioral Pediatrics, Nationwide Children's Hospital, Columbus, OH.
5
Department of Pediatrics, Johns Hopkins Medicine, Baltimore, MD.
6
Science Department, Autism Speaks, Cincinnati Children's Hospital, Division of Developmental and Behavioral Pediatrics, Boston, MA.

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.

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