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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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