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Journal of Autism and Developmental Disorders

, Volume 42, Issue 10, pp 2121–2140 | Cite as

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

  • Diana E. Schendel
  • Carolyn DiGuiseppi
  • Lisa A. Croen
  • M. Daniele Fallin
  • Philip L. Reed
  • Laura A. Schieve
  • Lisa D. Wiggins
  • Julie Daniels
  • Judith Grether
  • Susan E. Levy
  • Lisa Miller
  • Craig Newschaffer
  • Jennifer Pinto-Martin
  • Cordelia Robinson
  • Gayle C. Windham
  • Aimee Alexander
  • Arthur S. Aylsworth
  • Pilar Bernal
  • Joseph D. Bonner
  • Lisa Blaskey
  • Chyrise Bradley
  • Jack Collins
  • Casara J. Ferretti
  • Homayoon Farzadegan
  • Ellen Giarelli
  • Marques Harvey
  • Susan Hepburn
  • Matthew Herr
  • Kristina Kaparich
  • Rebecca Landa
  • Li-Ching Lee
  • Brooke Levenseller
  • Stacey Meyerer
  • Mohammad H. Rahbar
  • Andria Ratchford
  • Ann Reynolds
  • Steven Rosenberg
  • Julie Rusyniak
  • Stuart K. Shapira
  • Karen Smith
  • Margaret Souders
  • Patrick Aaron Thompson
  • Lisa Young
  • Marshalyn Yeargin-Allsopp
Original Paper

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.

Keywords

Autism Epidemiology Study methods Risk factors Phenotype 

Notes

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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Copyright information

© Springer Science+Business Media, LLC (outside the USA) 2012

Authors and Affiliations

  • Diana E. Schendel
    • 1
  • Carolyn DiGuiseppi
    • 2
  • Lisa A. Croen
    • 3
  • M. Daniele Fallin
    • 4
  • Philip L. Reed
    • 5
  • Laura A. Schieve
    • 1
  • Lisa D. Wiggins
    • 1
  • Julie Daniels
    • 6
  • Judith Grether
    • 7
  • Susan E. Levy
    • 8
  • Lisa Miller
    • 9
  • Craig Newschaffer
    • 10
  • Jennifer Pinto-Martin
    • 11
  • Cordelia Robinson
    • 12
  • Gayle C. Windham
    • 7
  • Aimee Alexander
    • 1
  • Arthur S. Aylsworth
    • 13
  • Pilar Bernal
    • 14
  • Joseph D. Bonner
    • 5
  • Lisa Blaskey
    • 8
  • Chyrise Bradley
    • 15
  • Jack Collins
    • 3
  • Casara J. Ferretti
    • 8
  • Homayoon Farzadegan
    • 4
  • Ellen Giarelli
    • 16
  • Marques Harvey
    • 1
  • Susan Hepburn
    • 12
  • Matthew Herr
    • 15
  • Kristina Kaparich
    • 12
  • Rebecca Landa
    • 17
  • Li-Ching Lee
    • 4
  • Brooke Levenseller
    • 16
  • Stacey Meyerer
    • 4
  • Mohammad H. Rahbar
    • 18
  • Andria Ratchford
    • 9
  • Ann Reynolds
    • 12
  • Steven Rosenberg
    • 12
  • Julie Rusyniak
    • 17
  • Stuart K. Shapira
    • 1
  • Karen Smith
    • 7
  • Margaret Souders
    • 16
  • Patrick Aaron Thompson
    • 5
  • Lisa Young
    • 16
  • Marshalyn Yeargin-Allsopp
    • 1
  1. 1.National Center on Birth Defects and Developmental DisabilitiesCenters for Disease Control and PreventionAtlantaUSA
  2. 2.Department of Epidemiology, Colorado School of Public HealthUniversity of Colorado DenverDenverUSA
  3. 3.Division of ResearchKaiser Permanente Northern CaliforniaOaklandUSA
  4. 4.Department of EpidemiologyJohns Hopkins University Bloomberg School of Public HealthBaltimoreUSA
  5. 5.Clinical and Translational Sciences InstituteMichigan State UniversityEast LansingUSA
  6. 6.Departments of Epidemiology and Maternal and Child Health, Gillings School of Global Public HealthUniversity of North Carolina at Chapel HillChapel HillUSA
  7. 7.Division of Environmental and Occupational Disease ControlCA Department of Public HealthOaklandUSA
  8. 8.Center for AutismChildren’s Hospital of PhiladelphiaPhiladelphiaUSA
  9. 9.Colorado Department of Public Health and EnvironmentDenverUSA
  10. 10.Department of Epidemiology and BiostatisticsDrexel University School of Public HealthPhiladelphiaUSA
  11. 11.University of Pennsylvania School of Nursing and School of MedicinePhiladelphiaUSA
  12. 12.University of Colorado Denver, School of MedicineDenverUSA
  13. 13.Departments of Pediatrics and Genetics, School of MedicineUniversity of North Carolina at Chapel HillChapel HillUSA
  14. 14.Autism Spectrum Disorders Center, San Jose Medical CenterKaiser Permanente Northern CaliforniaOaklandUSA
  15. 15.Department of Epidemiology, Gillings School of Global Public HealthUniversity of North Carolina at Chapel HillChapel HillUSA
  16. 16.University of Pennsylvania School of NursingPhiladelphiaUSA
  17. 17.Kennedy Krieger Institute and Department of Psychiatry and Behavioral SciencesJohns Hopkins University School of MedicineBaltimoreUSA
  18. 18.Division of Epidemiology, Human Genetics, and Environmental SciencesUniversity of Texas School of Public Health at HoustonHoustonUSA

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