Large Databases for Pediatric Research on Children with Autism Spectrum Disorder

被引：19

作者：

Kuhlthau, Karen A. ^{[1
,2
]}

Bailey, L. Charles ^{[3
,4
]}

Baer, Briella L. ^{[5
]}

Coury, Daniel L. ^{[6
]}

Law, Kiely ^{[5
,7
]}

Murray, Donna S. ^{[8
]}

Razzaghi, Hanieh ^{[3
,4
]}

Forrest, Christopher B. ^{[3
,4
]}

Lipkin, Paul H. ^{[5
,7
]}

机构：

[1] Harvard Univ, Massachusetts Gen Hosp, Div Gen Pediat, Dept Pediat, Boston, MA 02115 USA

[2] Harvard Univ, Harvard Med Sch, Boston, MA 02115 USA

[3] Childrens Hosp Philadelphia, Appl Clin Res Ctr, Philadelphia, PA 19104 USA

[4] Univ Penn, Perelman Sch Med, Philadelphia, PA 19104 USA

[5] Kennedy Krieger Inst, Dept Med Informat, Baltimore, MD USA

[6] Ohio State Univ, Dept Pediat, Nationwide Childrens Hosp, Dev & Behav Pediat, Columbus, OH 43210 USA

[7] Johns Hopkins Med, Dept Pediat, Baltimore, MD USA

[8] Cincinnati Childrens Hosp, Autism Speaks, Dept Sci, Div Dev & Behav Pediat, Boston, MA USA

来源：

JOURNAL OF DEVELOPMENTAL AND BEHAVIORAL PEDIATRICS | 2018年 / 39卷 / 02期

关键词：

autism; database; epidemilogy; INTERVENTION RESEARCH NETWORK; LEARNING HEALTH SYSTEM; PHYSICAL HEALTH; REGISTRY; PEDSNET; SLEEP;

D O I：

10.1097/DBP.0000000000000534

中图分类号：

B84 [心理学]; C [社会科学总论]; Q98 [人类学];

学科分类号：

03 ; 0303 ; 030303 ; 04 ; 0402 ;

摘要：

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.

引用

页码：168 / 176

页数：9

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