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 SurénEzra Susser

Research output: Contribution to journalArticlepeer-review

27 Scopus citations

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.

Original languageEnglish
Pages (from-to)2650-2663
Number of pages14
JournalJournal of Autism and Developmental Disorders
Volume43
Issue number11
DOIs
StatePublished - Nov 2013

Keywords

  • Autism
  • Epidemiology
  • Multinational
  • Risk factors
  • Study methods

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