Journal of Autism and Developmental Disorders

, Volume 43, Issue 11, pp 2650–2663 | Cite as

The International Collaboration for Autism Registry Epidemiology (iCARE): Multinational Registry-Based Investigations of Autism Risk Factors and Trends

  • Diana E. Schendel
  • Michaeline Bresnahan
  • Kim W. Carter
  • Richard W. Francis
  • Mika Gissler
  • Therese K. Grønborg
  • Raz Gross
  • Nina Gunnes
  • Mady Hornig
  • Christina M. Hultman
  • Amanda Langridge
  • Marlene B. Lauritsen
  • Helen Leonard
  • Erik T. Parner
  • Abraham Reichenberg
  • Sven Sandin
  • Andre Sourander
  • Camilla Stoltenberg
  • Auli Suominen
  • Pål Surén
  • Ezra Susser
Original Paper

Abstract

The International Collaboration for Autism Registry Epidemiology (iCARE) is the first multinational research consortium (Australia, Denmark, Finland, Israel, Norway, Sweden, USA) to promote research in autism geographical and temporal heterogeneity, phenotype, family and life course patterns, and etiology. iCARE devised solutions to challenges in multinational collaboration concerning data access security, confidentiality and management. Data are obtained by integrating existing national or state-wide, population-based, individual-level data systems and undergo rigorous harmonization and quality control processes. Analyses are performed using database federation via a computational infrastructure with a secure, web-based, interface. iCARE provides a unique, unprecedented resource in autism research that will significantly enhance the ability to detect environmental and genetic contributions to the causes and life course of autism.

Keywords

Autism Epidemiology Study methods Risk factors Multinational 

Notes

Acknowledgments

We wish to acknowledge iCARE funding support from Autism Speaks grant numbers: 6230, 6246–6249, 6251, 6295. We also gratefully acknowledge the contributions to iCARE development and implementation of the Centers for Disease Control and Prevention, Manuel Posada MD, PhD, Anastasia Nyman Iliadou, PhD, JukkaHuttunen, PhD and TanjaSarlin, MSc.

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Copyright information

© Springer Science+Business Media New York (outside the USA) 2013

Authors and Affiliations

  • Diana E. Schendel
    • 1
  • Michaeline Bresnahan
    • 2
    • 3
  • Kim W. Carter
    • 4
  • Richard W. Francis
    • 4
  • Mika Gissler
    • 5
    • 17
    • 18
  • Therese K. Grønborg
    • 6
  • Raz Gross
    • 7
    • 8
  • Nina Gunnes
    • 9
  • Mady Hornig
    • 2
    • 10
  • Christina M. Hultman
    • 11
  • Amanda Langridge
    • 4
  • Marlene B. Lauritsen
    • 12
  • Helen Leonard
    • 4
  • Erik T. Parner
    • 6
  • Abraham Reichenberg
    • 13
    • 14
  • Sven Sandin
    • 11
  • Andre Sourander
    • 15
  • Camilla Stoltenberg
    • 9
  • Auli Suominen
    • 16
  • Pål Surén
    • 9
  • Ezra Susser
    • 2
    • 3
  1. 1.Department of Public Health and Department of Economics and BusinessUniversity of AarhusAarhus CDenmark
  2. 2.Department of Epidemiology, Mailman School of Public HealthColumbia UniversityNew YorkUSA
  3. 3.New York State Psychiatric InstituteNew YorkUSA
  4. 4.Telethon Institute for Child Health Research, Centre for Child Health ResearchUniversity of Western AustraliaPerthAustralia
  5. 5.National Institute for Health and WelfareHelsinkiFinland
  6. 6.Department of Public HealthUniversity of AarhusAarhusDenmark
  7. 7.Division of PsychiatrySheba Medical CenterTel HashomerIsrael
  8. 8.Department of Epidemiology and Preventive Medicine, Sackler Faculty of MedicineTel Aviv UniversityRamat AvivIsrael
  9. 9.Norwegian Institute of Public HealthOsloNorway
  10. 10.Center for Infection and Immunity, Mailman School of Public HealthColumbia UniversityNew YorkUSA
  11. 11.Karolinska InstitutetStockholmSweden
  12. 12.Research Unit for Child and Adolescent PsychiatryAalborg Psychiatric Hospital, Aarhus University HospitalAalborgDenmark
  13. 13.Department of Psychosis Studies, Institute of PsychiatryKing’s College LondonLondonUK
  14. 14.Department of PsychiatryMount Sinai School of MedicineNew YorkUSA
  15. 15.Child Psychiatry Research Center, Department of Child PsychiatryTurku University and Turku University HospitalTurkuFinland
  16. 16.Department of Child PsychiatryTurku UniversityTurkuFinland
  17. 17.Nordic School of Public HealthGothenburgSweden
  18. 18.Turku UniversityTurkuFinland

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