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

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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.

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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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Authors and Affiliations

  1. Department of Public Health and Department of Economics and Business, University of Aarhus, 8000, Aarhus C, Denmark

    Diana E. Schendel

  2. Department of Epidemiology, Mailman School of Public Health, Columbia University, New York, USA

    Michaeline Bresnahan, Mady Hornig & Ezra Susser

  3. New York State Psychiatric Institute, New York, USA

    Michaeline Bresnahan & Ezra Susser

  4. Telethon Institute for Child Health Research, Centre for Child Health Research, University of Western Australia, Perth, WA, Australia

    Kim W. Carter, Richard W. Francis, Amanda Langridge & Helen Leonard

  5. National Institute for Health and Welfare, Helsinki, Finland

    Mika Gissler

  6. Department of Public Health, University of Aarhus, Aarhus, Denmark

    Therese K. Grønborg & Erik T. Parner

  7. Division of Psychiatry, Sheba Medical Center, Tel Hashomer, Israel

    Raz Gross

  8. Department of Epidemiology and Preventive Medicine, Sackler Faculty of Medicine, Tel Aviv University, Ramat Aviv, Israel

    Raz Gross

  9. Norwegian Institute of Public Health, Oslo, Norway

    Nina Gunnes, Camilla Stoltenberg & Pål Surén

  10. Center for Infection and Immunity, Mailman School of Public Health, Columbia University, New York, USA

    Mady Hornig

  11. Karolinska Institutet, Stockholm, Sweden

    Christina M. Hultman & Sven Sandin

  12. Research Unit for Child and Adolescent Psychiatry, Aalborg Psychiatric Hospital, Aarhus University Hospital, Aalborg, Denmark

    Marlene B. Lauritsen

  13. Department of Psychosis Studies, Institute of Psychiatry, King’s College London, London, UK

    Abraham Reichenberg

  14. Department of Psychiatry, Mount Sinai School of Medicine, New York, USA

    Abraham Reichenberg

  15. Child Psychiatry Research Center, Department of Child Psychiatry, Turku University and Turku University Hospital, Turku, Finland

    Andre Sourander

  16. Department of Child Psychiatry, Turku University, Turku, Finland

    Auli Suominen

  17. Nordic School of Public Health, Gothenburg, Sweden

    Mika Gissler

  18. Turku University, Turku, Finland

    Mika Gissler

Authors
  1. Diana E. Schendel
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  2. Michaeline Bresnahan
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  3. Kim W. Carter
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  4. Richard W. Francis
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  5. Mika Gissler
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  6. Therese K. Grønborg
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  7. Raz Gross
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  8. Nina Gunnes
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  9. Mady Hornig
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  10. Christina M. Hultman
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  11. Amanda Langridge
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  12. Marlene B. Lauritsen
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  13. Helen Leonard
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  14. Erik T. Parner
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  15. Abraham Reichenberg
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  16. Sven Sandin
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  17. Andre Sourander
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  18. Camilla Stoltenberg
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  19. Auli Suominen
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  20. Pål Surén
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  21. Ezra Susser
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Corresponding author

Correspondence to Diana E. Schendel.

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Schendel, D.E., Bresnahan, M., Carter, K.W. et al. The International Collaboration for Autism Registry Epidemiology (iCARE): Multinational Registry-Based Investigations of Autism Risk Factors and Trends. J Autism Dev Disord 43, 2650–2663 (2013). https://doi.org/10.1007/s10803-013-1815-x

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  • DOI: https://doi.org/10.1007/s10803-013-1815-x

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