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The Autism Speaks Autism Treatment Network Registry Data: Opportunities for Investigators

TitleThe Autism Speaks Autism Treatment Network Registry Data: Opportunities for Investigators
Publication TypeJournal Article
Year of Publication2016
AuthorsMurray, DS, Fedele, A, Shui, AM, Coury, DL
JournalPediatrics
Volume137
PaginationS72–S78
Summary

Lead Author
Donna S. Murray

Study Aims and Objectives To describe the creation of protocol, recruitment of participants, current findings, and possible uses of the Autism Treatment Network (ATN) Registry.

Methods- Sample, Procedure, Study Measures, Analysis
Children were selected for registry enrollment from the 14 ATN sites based on several inclusion and exclusion criteria, including diagnosis of ASD by ADOS and/or DSM-5 standards. Children had to be between the ages of 2.0 and 17.6 years of age and could be of any sex. Enrollees were given a randomized number, and their information was de-identified before entering the registry.

Results- Main Findings
Clinical data for over 6,800 children diagnosed with ASD had been gathered as of February 2016. 83.8% of these participants were male, and 79.9% were white. Data was collected about sleep habits, quality of life, IQ, medications, adaptive behaviors, and sensory profiles. Longitudinal data will be collected from participants as well, with follow up visits scheduled one, two, and three years post-enrollment.

Conclusion- Summary Statement
This registry was created to help advance research, care, and best practices for those with an ASD diagnosis. So far, the registry has helped to shed light on health problems that often go hand in hand with ASD- including gastrointestinal issues, sleep disorders, and epilepsy. The longitudinal data gathered in this registry will be critical in tracking the health outcomes of these patients and will allow researchers to gain insight regarding the life course of ASD.

PubMed ID26908480