New Directions and Research Opportunities for Investigators: Longitudinal Outcomes in the Autism Speaks Autism Treatment Network (AS ATN)
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 ATN Registry is unique in containing data on medical co-morbidity, as well as diagnostic, behavioral, and functional assessments. As of December 2013, there were 6854 children enrolled in the AS ATN Registry. While cross-sectional data are valuable, there is a critical need to track children over time in order to better examine the trajectory of medical co-morbidities in ASD and their impact on neurodevelopmental outcomes. A subset of children in the current registry have longitudinal data (medical follow-up visits in year 1, 2, and 3). The AS ATN has made a focused effort over the last 12 months to increase the longitudinal data in the registry to provide researchers with more opportunities to examine medical and clinical changes in children with ASD over time. 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.
To make IMFAR attendees aware of the type of longitudinal data available in the AS ATN Registry.
Baseline measures including autism assessment, cognitive, behavioral, quality of life, 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. Counts were provided for the number of children with longitudinal data available for each measure.
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). Medication use had the most longitudinal data available. Information on medication use, including ADHD meds, alpha agonists, anticonvulsants, SSRIs, atypical antipsychotics, and melatonin, is available for 2770 children at baseline and first follow-up, for 1242 children at baseline, first, and second follow-up, and for 583 children at baseline, first, second, and third follow-up. Similar counts are provided for the ABC irritability subscale, PedsQL total scale, CGS-severity of autism, CGI-level of autism, Stanford-Binet abbreviated IQ standard score, Vineland adaptive behavior composite standard scores, and several parent form questions.
Over 6800 children with ASD have been enrolled in the AS ATN Registry, and the ATN continues to enroll and collect longitudinal data on measures such as autism assessment, cognitive, behavioral, quality of life, 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.