Journal of Autism and Developmental Disorders

, Volume 43, Issue 11, pp 2650–2663

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

Authors

    • Department of Public Health and Department of Economics and BusinessUniversity of Aarhus
  • Michaeline Bresnahan
    • Department of Epidemiology, Mailman School of Public HealthColumbia University
    • New York State Psychiatric Institute
  • Kim W. Carter
    • Telethon Institute for Child Health Research, Centre for Child Health ResearchUniversity of Western Australia
  • Richard W. Francis
    • Telethon Institute for Child Health Research, Centre for Child Health ResearchUniversity of Western Australia
  • Mika Gissler
    • National Institute for Health and Welfare
    • Nordic School of Public Health
    • Turku University
  • Therese K. Grønborg
    • Department of Public HealthUniversity of Aarhus
  • Raz Gross
    • Division of PsychiatrySheba Medical Center
    • Department of Epidemiology and Preventive Medicine, Sackler Faculty of MedicineTel Aviv University
  • Nina Gunnes
    • Norwegian Institute of Public Health
  • Mady Hornig
    • Department of Epidemiology, Mailman School of Public HealthColumbia University
    • Center for Infection and Immunity, Mailman School of Public HealthColumbia University
  • Christina M. Hultman
    • Karolinska Institutet
  • Amanda Langridge
    • Telethon Institute for Child Health Research, Centre for Child Health ResearchUniversity of Western Australia
  • Marlene B. Lauritsen
    • Research Unit for Child and Adolescent PsychiatryAalborg Psychiatric Hospital, Aarhus University Hospital
  • Helen Leonard
    • Telethon Institute for Child Health Research, Centre for Child Health ResearchUniversity of Western Australia
  • Erik T. Parner
    • Department of Public HealthUniversity of Aarhus
  • Abraham Reichenberg
    • Department of Psychosis Studies, Institute of PsychiatryKing’s College London
    • Department of PsychiatryMount Sinai School of Medicine
  • Sven Sandin
    • Karolinska Institutet
  • Andre Sourander
    • Child Psychiatry Research Center, Department of Child PsychiatryTurku University and Turku University Hospital
  • Camilla Stoltenberg
    • Norwegian Institute of Public Health
  • Auli Suominen
    • Department of Child PsychiatryTurku University
  • Pål Surén
    • Norwegian Institute of Public Health
  • Ezra Susser
    • Department of Epidemiology, Mailman School of Public HealthColumbia University
    • New York State Psychiatric Institute
Original Paper

DOI: 10.1007/s10803-013-1815-x

Cite this article as:
Schendel, D.E., Bresnahan, M., Carter, K.W. et al. J Autism Dev Disord (2013) 43: 2650. doi:10.1007/s10803-013-1815-x

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

AutismEpidemiologyStudy methodsRisk factorsMultinational

Copyright information

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