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Rehabilitation Dataset Directory: Dataset Profile

Dataset: The Autism Treatment Network Registry (ATN)

Basic Information
Dataset Full Name The Autism Treatment Network Registry
Dataset Acronym ATN
Summary

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.
Key Terms

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
Study Design Cross-Sectional
Data Type(s) Administrative
Clinical
Survey
Sponsoring Agency/Entity

Autism Speaks
Health Conditions/Disability Measures
Health Condition(s)

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
Disability Measures

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
Topics

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
Sample
Sample Population

Patients aged 2 to 17 ½ years old diagnosed with Autism Spectrum Disorder
Sample Size/Notes

7,172 children (as of 8/2018)
Unit of Observation

Individual/Patient
Continent(s)

North America
Countries

United States and Canada
Geographic Coverage

17 Sites (inclusive, between 2008-2018)

  • United States - East
    • Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania
    • Lurie Center for Autism / MGH, Boston, Massachusetts
    • University of Pittsburgh Medical Center, Pittsburgh, Pennsylvania
    • University of Rochester Medical Center, Rochester, New York
  • United States - South
    • University of Arkansas for Medical Sciences/UAMS, Little Rock, Arkansas
    • Vanderbilt University Medical Center, Nashville, Tennessee
  • United States - Midwest
    • Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio
    • Nationwide Children’s Hospital / The Ohio State University, Columbus, Ohio
    • University of Missouri – Columbia/Thompson Center, Columbia, Missouri
    • Knights of Columbus Child Development Center at SSM
  • United States - West
    • Children’s Hospital Los Angeles, Los Angeles, California
    • The Center for Autism & Neurodevelopmental Disorders at UC Irvine, Santa Ana, California
    • University of Colorado
    • Oregon Health & Science University
    • University of Washington
  • Canada
    • Holland Bloorview Kids Rehab/The Hospital for Sick Children/SurreyPlace Centre, Toronto, Ontario, Canada
    • Alberta Health Services/Glenrose Rehabilitation Hospital,Edmonton, Alberta, Canada
Geographic Specificity

NA
Special Population(s)

Children/Youth diagnosed with Autism Spectrum Disorder
Data Collection
Data Collection Mode

Parent surveys and Clinical data 
Years Collected

2008 - present
Data Collection Frequency

Quarterly
Strengths and Limitations
Strengths

Relatively large sample size

  • Longitudinal measures on subset of individuals.
  • Diverse racial, ethnic and geographic representation
  • Includes clinician’s measures and parent survey responses
  • Additional information on co-occurring health conditions
  • Significant diversity in clinically validated measures and assessments.
  • Easy to use, open-access query tool for simple frequency counts
  • Centralized data architecture provides de-identified data and aggregated across all sites.
Limitations
  • Self-selection bias 
  • Some study data access is limited by a hold-back period
  • Participants from limited geographical catchment areas
Data Details
Primary Website http://asatn.org/clinicians/unique
Data Access

1. Data Query Tool:

   http://asatn.org/asatn-query


2. Detailed Data Request:

http://asatn.org/node/add/request-for-data
Data Access Requirements

Public Use Dataset (for preliminary queries):

    Online Query Tool


Full dataset access: 

 Data Use agreement, No cost

ATN Data Access policy
Summary Tables/Reports

Basic demographic breakdown table:

http://asatn.org/node/223


Online Query tool:

http://asatn.org/asatn-query
Data Components
NA
Selected Papers
Other Papers

ATN based publications:

http://asatn.org/biblio


Archive of Requests for Data (RFD)

Brief descriptions of past/current data use:

http://asatn.org/request/data/search
Technical

List of assessments included in the ATN Registry:

http://asatn.org/sites/default/files/atn_registry_forms_2012-10-31.pdf
Related Repositories
Repositories

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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.

For questions or comments please contact disabilitystatistics@cornell.edu



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