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A Familiarization Protocol Facilitates the Participation of Children with ASD in Electrophysiological Research
Published on: July 31, 2017
Large Databases for Pediatric Research on Children with Autism Spectrum Disorder
Karen A Kuhlthau1, L Charles Bailey2, Briella L Baer3
1Division of General Pediatrics, Department of Pediatrics, Massachusetts General Hospital and Harvard Medical School, Harvard University, Boston, MA.
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.
