Department of Public Health and Department of Economics and Business, University of Aarhus, 8000, Aarhus C, Denmark,
J Autism Dev Disord. 2013 Nov;43(11):2650-63. doi: 10.1007/s10803-013-1815-x.
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.
自闭症国际合作注册研究(iCARE)是第一个跨国研究联盟(澳大利亚、丹麦、芬兰、以色列、挪威、瑞典、美国),旨在促进自闭症的地理和时间异质性、表型、家庭和生命历程模式以及病因的研究。iCARE 针对跨国合作中数据访问安全、保密性和管理方面的挑战制定了解决方案。通过整合现有的国家或州级、基于人群的、个体层面的数据系统,获得数据,并经过严格的协调和质量控制过程。分析通过计算基础设施中的数据库联合进行,该基础设施具有安全的基于网络的接口。iCARE 为自闭症研究提供了一个独特的、前所未有的资源,将极大地提高检测环境和遗传因素对自闭症病因和病程的贡献的能力。