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The Study to Explore Early Development (SEED): A Multisite Epidemiologic Study of Autism by the Centers for Autism and Developmental Disabilities Research and Epidemiology (CADDRE) Network

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Abstract

The Study to Explore Early Development (SEED), a multisite investigation addressing knowledge gaps in autism phenotype and etiology, aims to: (1) characterize the autism behavioral phenotype and associated developmental, medical, and behavioral conditions and (2) investigate genetic and environmental risks with emphasis on immunologic, hormonal, gastrointestinal, and sociodemographic characteristics. SEED uses a case–control design with population-based ascertainment of children aged 2–5 years with an autism spectrum disorder (ASD) and children in two control groups—one from the general population and one with non-ASD developmental problems. Data from parent-completed questionnaires, interviews, clinical evaluations, biospecimen sampling, and medical record abstraction focus on the prenatal and early postnatal periods. SEED is a valuable resource for testing hypotheses regarding ASD characteristics and causes.

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Acknowledgments

We gratefully acknowledge the technical, clinical, and scientific contributions of the following people to the study planning and implementation of SEED: Jennifer Baltz, Craig Clement, Lindsey Culp, Jamie Dahm, Paige Gallito-Zaparaniuk, Isabella Hardwick, Victoria Heffernan, Charmaine McKenzie, Katie Voss; Rachel Avchen, Tanya Karapurkar Bhasin, Kathy Barron, Chris Colemeco, Tom Crawford, Becky Edmondson, Ellen Elias, Art Grix, Janine Higgins, Nancy Hobson, Julie Hoover-Fong; Susan Johnson, Melanie Kasten, Marti Kepner, Patti Leonard, Kathleen Lesko, Sara Nixon, Michelle Petrongolo, Debbie Reinhartsen, Catherine Rice, Marjorie Shulbank, Kathleen Thomas, Megan Carolan Tomkinson, Victoria Tompkins, Ann Tsai, Dana Won, Mi-Yeet Wong, Jordana Woodford; Amy Sims, Frank Destefano. We recognize all SEED recruitment, enrollment, interviewing, clinical evaluation, medical abstraction, data management, and research assistant staff members for their ongoing efforts in SEED. We appreciate the support by SEED’s local collaborators: California Department of Developmental Services; the Regional Center of the East Bay; the San Andreas Regional Center; the California Department of Public Health; the Colorado Department of Public Health and Environment Vital Records Section; The Children’s Hospital, Denver; JFK Partners, University of Colorado School of Medicine; the Metro Denver Early Intervention Colorado Part C programs; the Metropolitan Atlanta Public School Districts; the Georgia Department of Community Health; the Georgia Department of Behavioral Health and Developmental Disabilities; the Emory Clinic; Emory Children’s Center; Children’s Hospital of Atlanta; Developmental and Child Behavioral Associates; Woodlawn Developmental Pediatrics; the Maryland Department of Health and Mental Hygiene, Department of Vital Statistics; the Maryland State Department of Education, Division of Special Education/Early Intervention Services; Kennedy Krieger Institute Center for Autism and Related Disorders; the State Center for Health Statistics and the Early Intervention Branch of the NC Department of Health and Human Services; the Carolina Institute for Developmental Disabilities Research Registry; the Chester County Intermediate Unit; Elwyn Incorporated; Variety Club; the Center for Autism, Conshohocken; the Pennsylvania Department of Vital Statistics. We also are thankful for the valuable advice and guidance provided by our local partners: California CADDRE Community Advisory Board and Pennsylvania CADDRE Community Advisory Board. Finally, we extend our sincere appreciation, admiration, and respect to SEED children and families who made all our efforts in SEED possible. This publication was supported by six cooperative agreements from the Centers for Disease Control and Prevention: Cooperative Agreement Number U10DD000180, Colorado Department of Public Health; Cooperative Agreement Number U10DD000181, Kaiser Foundation Research Institute (CA); Cooperative Agreement Number U10DD000182, University of Pennsylvania; Cooperative Agreement Number U10DD000183, Johns Hopkins University; Cooperative Agreement Number U10DD000184, University of North Carolina at Chapel Hill; and Cooperative Agreement Number U10DD000498, Michigan State University.

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Authors and Affiliations

  1. National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, 1600 Clifton Road, MS E-86, Atlanta, GA, 30333, USA

    Diana E. Schendel, Laura A. Schieve, Lisa D. Wiggins, Aimee Alexander, Marques Harvey, Stuart K. Shapira & Marshalyn Yeargin-Allsopp

  2. Department of Epidemiology, Colorado School of Public Health, University of Colorado Denver, Denver, CO, USA

    Carolyn DiGuiseppi

  3. Division of Research, Kaiser Permanente Northern California, Oakland, CA, USA

    Lisa A. Croen & Jack Collins

  4. Department of Epidemiology, Johns Hopkins University Bloomberg School of Public Health, Baltimore, MD, USA

    M. Daniele Fallin, Homayoon Farzadegan, Li-Ching Lee & Stacey Meyerer

  5. Clinical and Translational Sciences Institute, Michigan State University, East Lansing, MI, USA

    Philip L. Reed, Joseph D. Bonner & Patrick Aaron Thompson

  6. Departments of Epidemiology and Maternal and Child Health, Gillings School of Global Public Health, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA

    Julie Daniels

  7. Division of Environmental and Occupational Disease Control, CA Department of Public Health, Oakland, CA, USA

    Judith Grether, Gayle C. Windham & Karen Smith

  8. Center for Autism, Children’s Hospital of Philadelphia, Philadelphia, PA, USA

    Susan E. Levy, Lisa Blaskey & Casara J. Ferretti

  9. Colorado Department of Public Health and Environment, Denver, CO, USA

    Lisa Miller & Andria Ratchford

  10. Department of Epidemiology and Biostatistics, Drexel University School of Public Health, Philadelphia, PA, USA

    Craig Newschaffer

  11. University of Pennsylvania School of Nursing and School of Medicine, Philadelphia, PA, USA

    Jennifer Pinto-Martin

  12. University of Colorado Denver, School of Medicine, Denver, CO, USA

    Cordelia Robinson, Susan Hepburn, Kristina Kaparich, Ann Reynolds & Steven Rosenberg

  13. Departments of Pediatrics and Genetics, School of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA

    Arthur S. Aylsworth

  14. Autism Spectrum Disorders Center, San Jose Medical Center, Kaiser Permanente Northern California, Oakland, CA, USA

    Pilar Bernal

  15. Department of Epidemiology, Gillings School of Global Public Health, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA

    Chyrise Bradley & Matthew Herr

  16. University of Pennsylvania School of Nursing, Philadelphia, PA, USA

    Ellen Giarelli, Brooke Levenseller, Margaret Souders & Lisa Young

  17. Kennedy Krieger Institute and Department of Psychiatry and Behavioral Sciences, Johns Hopkins University School of Medicine, Baltimore, MD, USA

    Rebecca Landa & Julie Rusyniak

  18. Division of Epidemiology, Human Genetics, and Environmental Sciences, University of Texas School of Public Health at Houston, Houston, TX, USA

    Mohammad H. Rahbar

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  1. Diana E. Schendel
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  2. Carolyn DiGuiseppi
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  44. Marshalyn Yeargin-Allsopp
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Corresponding author

Correspondence to Diana E. Schendel.

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Disclaimer: 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.

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Schendel, D.E., DiGuiseppi, C., Croen, L.A. et al. The Study to Explore Early Development (SEED): A Multisite Epidemiologic Study of Autism by the Centers for Autism and Developmental Disabilities Research and Epidemiology (CADDRE) Network. J Autism Dev Disord 42, 2121–2140 (2012). https://doi.org/10.1007/s10803-012-1461-8

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