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Brief Report: Independent Validation of Autism Spectrum Disorder Case Status in the Utah Autism and Developmental Disabilities Monitoring (ADDM) Network Site

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Abstract

An independent validation was conducted of the Utah Autism and Developmental Disabilities Monitoring Network’s (UT-ADDM) classification of children with autism spectrum disorder (ASD). UT-ADDM final case status (n = 90) was compared with final case status as determined by independent external expert reviewers (EERs). Inter-rater reliability (ICC = 0.84), specificity [0.83 (95 % CI 0.74–0.90)], and sensitivity [0.99 (95 % CI 0.96–1.00)] were high for ASD case versus non-case classification between UT-ADDM and EER. At least one EER disagreed with UT-ADDM on ASD final case status on nine out of 30 records; however, all three EERs disagreed with UT-ADDM for only one record. Findings based on limited data suggest that children with ASD as identified by UT-ADDM are consistently classified as ASD cases by independent autism experts.

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Acknowledgments

Surveillance data used for this study were collected under the Grant/Cooperative Agreement UR3DD000685 from the Centers for Disease Control and Prevention. The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.

Author information

Authors and Affiliations

  1. Department of Psychiatry, University of Utah, 650 Komas Drive Suite 206, Salt Lake City, UT, 84108, USA

    Amanda V. Bakian, Deborah A. Bilder & Tyler D. Hunt

  2. Department of Pediatrics, University of Utah, Salt Lake City, UT, USA

    Paul S. Carbone & Tyler D. Hunt

  3. Valley Mental Health’s Carmen B. Pingree Center for Children with Autism, Salt Lake City, UT, USA

    Brent Petersen

  4. National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA, USA

    Catherine E. Rice

Authors
  1. Amanda V. Bakian
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  2. Deborah A. Bilder
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  3. Paul S. Carbone
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  4. Tyler D. Hunt
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  5. Brent Petersen
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  6. Catherine E. Rice
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Corresponding author

Correspondence to Amanda V. Bakian.

Additional information

This study is dedicated to our friend and co-author, Dr. Brent Petersen who passed away prior to the completion of this manuscript. Brent dedicated his life to serving others including children with autism and their families.

Brent Petersen: Deceased.

Appendix: ASD Independent External Expert Review Summary Coding Form

Appendix: ASD Independent External Expert Review Summary Coding Form

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Bakian, A.V., Bilder, D.A., Carbone, P.S. et al. Brief Report: Independent Validation of Autism Spectrum Disorder Case Status in the Utah Autism and Developmental Disabilities Monitoring (ADDM) Network Site. J Autism Dev Disord 45, 873–880 (2015). https://doi.org/10.1007/s10803-014-2187-6

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  • DOI: https://doi.org/10.1007/s10803-014-2187-6

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