The Autism Speaks Autism Treatment Network (AS ATN) Registry Data: Opportunities for Investigators

Background:   The Autism Speaks Autism Treatment Network (AS ATN) Registry, which began enrollment in December 2007, is a multi-center clinical registry that includes both retrospective and prospective data on children ages 2-17 years with ASD.   The AS ATN is the first bi-national network of hospitals, physicians, researchers, and families at 17 centers across the United States and Canada. One of the goals of the AS ATN is to provide opportunities to develop collaborations and partnerships with clinicians and researchers who are external to its current ATN centers. We would like investigators to know what kind of data is available in the registry for their research.  In addition to the registry, researchers may also propose to use data from the Autism Intervention Research Network on Physical Health (AIR-P) studies, including nutrition, sleep, metabolism and biomarkers, and neurology and behavioral outcomes, in conjunction with the registry data.

Objectives:   To make IMFAR attendees aware of a unique autism-related research resource:  the ATN Registry.

Methods: As of December 2013, there were 6854 children enrolled in the AS ATN Registry. Baseline measures including demographics, autism assessment, cognitive, behavioral, sleep habits, quality of life, sensory, and medications were described.  Frequencies for categorical variables were tabulated, and descriptive statistics (number of observations, mean, and standard deviation) were generated for continuous variables.  The number of observations available varies by measure, as some items have more complete information collected than others. Missing data and forms are currently being resolved with the sites.

Results:   The majority of the children in the registry are male (83.9%), Caucasian (80.0%), non-Hispanic (89.8%), have an ASD diagnosis of autism (72.3%), have primary caregiver education level of at least some college (78.8%), and have a mean age at enrollment of  6 years (6.2 ± 3.4).  Descriptive statistics are also provided for the calibrated ADOS severity, IQ, Children’s Sleep Habits Questionnaire (CSHQ), Pediatric Quality of Life Inventory (PedsQL), Vineland Adaptive Behavior, Short Sensory Profile (SSP), Child Behavior Checklist (CBCL), and medications and parent form questions. 

Conclusions:   Over 6800 children with ASD have been enrolled in the AS ATN Registry, and the ATN continues to enroll and collect data on measures such as demographics, autism assessment, cognitive, behavioral, sleep habits, quality of life, sensory, and medications. Investigators may explore the registry data using the online query tool (ASATN.org/asatn-query) and may propose research analyses by submitting a Request for Data (RFD) to the AS ATN. For more information on the RFD please visit ASATN.org/request/data.