title: The International Collaboration for Autism Registry Epidemiology (iCARE): multinational registry-based investigations of autism risk factors and trends.
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.
authors.affiliation: Department of Public Health and Department of Economics and Business, University of Aarhus, 8000, Aarhus C, Denmark, diana.schendel@folkesundhed.au.dk.
authors.forename: Diana E
authors.initials: DE
authors.lastname: Schendel
authors.forename: Michaeline
authors.initials: M
authors.lastname: Bresnahan
authors.forename: Kim W
authors.initials: KW
authors.lastname: Carter
authors.forename: Richard W
authors.initials: RW
authors.lastname: Francis
authors.forename: Mika
authors.initials: M
authors.lastname: Gissler
authors.forename: Therese K
authors.initials: TK
authors.lastname: Grønborg
authors.forename: Raz
authors.initials: R
authors.lastname: Gross
authors.forename: Nina
authors.initials: N
authors.lastname: Gunnes
authors.forename: Mady
authors.initials: M
authors.lastname: Hornig
authors.forename: Christina M
authors.initials: CM
authors.lastname: Hultman
authors.forename: Amanda
authors.initials: A
authors.lastname: Langridge
authors.forename: Marlene B
authors.initials: MB
authors.lastname: Lauritsen
authors.forename: Helen
authors.initials: H
authors.lastname: Leonard
authors.forename: Erik T
authors.initials: ET
authors.lastname: Parner
authors.forename: Abraham
authors.initials: A
authors.lastname: Reichenberg
authors.forename: Sven
authors.initials: S
authors.lastname: Sandin
authors.forename: Andre
authors.initials: A
authors.lastname: Sourander
authors.forename: Camilla
authors.initials: C
authors.lastname: Stoltenberg
authors.forename: Auli
authors.initials: A
authors.lastname: Suominen
authors.forename: Pål
authors.initials: P
authors.lastname: Surén
authors.forename: Ezra
authors.initials: E
authors.lastname: Susser
mesh_terms: D002648:Child; D002659:Child Development Disorders, Pervasive / Q000175:diagnosis / Q000453:epidemiology* / Q000209:etiology; D003299:Cooperative Behavior; D016208:Databases, Factual; D003718:Denmark; D006801:Humans; D020407:Internet; D012042:Registries; D012307:Risk Factors; D012984:Software
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