|Dataset Full Name||The Autism Treatment Network Registry|
The Autism Treatment Network Registry (ATN) is a collaboration between Autism Speaks and a network of hospitals, physicians and researchers at 17 sites across the U.S and Canada. It is centered around clinical and health related research and developed to improve care for children with autism spectrum disorder (ASD) and promote best practices in interdisciplinary medical care. Behavioral and medical data from the care and outcomes of children seen in the network facilities is stored in the registry database. The registry contains de-identified data aggregated across all sites on over 7,000 children diagnosed with ASD ages 2 – 17 ½ .
Although primarily cross sectional data the ATN also includes some longitudinal follow-up data for a subset of 672 consenting to participate in the Registry Call Back Assessment (RCBA) collected between 2015-2017. The RCBA included a battery of assessments designed to track the trajectory of major medical co-morbidities (sleep, GI distress, anxiety, hyperactivity and anthropometrics) and their relationships with behavioral and functional outcomes. RCBA data includes: physical exam, diagnoses and problems, medical and behavioral treatment, and behavioral, cognitive, and communication measures. RCBA data will become available on 1/18/2019.
ATN, Autism, Autism Spectrum Disorder, ASD, Asperger’s, Child, Pediatric, Adolescent, IQ, Phenotype, Pervasive Developmental Disorder, PDD, PDD-NOS, Rett syndrome, Childhood Disintegrative Disorder, CDD, Medications, Treatments
|Health Conditions/Disability Measures|
ADD/ADHD, Anxiety disorders, Autism spectrum disorders, Bipolar disorder, Body mass index (BMI)/obesity, Depression, Down syndrome, Kidney/renal condition, Migraine or frequent headaches
Asperger’s syndrome, Pervasive Developmental Disorder (PDD), Obsessive Compulsive Disorder (OCD), Childhood Disintegrative Disorder (CDD), Diagnosed genetic conditions: Tuberous sclerosis (TS), Down syndrome, Rett syndrome, Fragile X, Neurofibromatosis, Angelman's, NF-1
Hearing disability, Visual disability, Cognitive disability,
Autism Diagnostic Observation Schedule (ADOS), Autism diagnostic interview, Cognitive assessment, Vineland adaptive behavior scale, Child behavior checklist, Pediatric quality of life, Autism symptom severity, Communication measures
|Measures/Outcomes of Interest|
Anthropometrics, Neurologic evaluation, DSM-5 checklist, Dysmorphology examination, Clinical global impression, Autism impact measure, Caregiver strain, Patient activation measure, Development disabilities, Gastrointestinal symptoms inventory, Aberrant behavior checklist, Autism diagnostic observation schedule, Child behavior checklist, Pediatric quality of life inventory, Short sensory profile, Global health, Developmental milestones, Medications, Therapies, Parent and child demographics
Patients aged 2 to 17 ½ years old diagnosed with Autism Spectrum Disorder
7,172 children (as of 8/2018)
|Unit of Observation||
United States and Canada
Children/Youth diagnosed with Autism Spectrum Disorder
|Data Collection Mode||
Parent surveys and Clinical data
2008 - present
|Data Collection Frequency||
|Strengths and Limitations|
Relatively large sample size
1. Data Query Tool:
2. Detailed Data Request:
|Data Access Requirements||
Public Use Dataset (for preliminary queries):
Full dataset access:
Data Use agreement, No cost
Basic demographic breakdown table:
ATN based publications:
Archive of Requests for Data (RFD)
Brief descriptions of past/current data use:
Basic registry description:
List of assessments included in the ATN Registry:
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The Rehabilitation Research Cross-dataset Variable Catalog has been developed through the Center for Large Data Research & Data Sharing in Rehabilitation (CLDR). The Center for Large Data Research and Data Sharing in Rehabilitation involves a consortium of investigators from the University of Texas Medical Branch, Cornell University's Yang Tan Institute (YTI), and the University of Michigan. The CLDR is funded by NIH - National Institute of Child Health and Human Development, through the National Center for Medical Rehabilitation Research, the National Institute for Neurological Disorders and Stroke, and the National Institute of Biomedical Imaging and Bioengineering. (P2CHD065702).
Other CLDR supported resources and collaborative opportunities:
Acknowledgements: This tool was developed through the efforts of William Erickson and Arun Karpur, and web designers Jason Criss and Jeff Trondsen at Cornell University. Many thanks to graduate students Kyoung Jo Oh and Yeong Joon Yoon who developed much of the content used in this tool.
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