Quality, quantity and harmony: the DataSHaPER approach to integrating data across bioclinical studies

作者：Isabel Fortier, Paul R. Burton, Paula J. Robson, Vincent Ferretti, Julian Little, François L’Heureux, M. Deschênes, Bartha Maria Knoppers, Dany Doiron, J. C. Keers, Pamela Linksted, Jennifer R. Harris, Geneviève Lachance, Cathérine Boileau, Nancy L. Pedersen, Carol M. Hamilton, Kristian Hveem, Marilyn J. Borugian, Richard P. Gallagher, John McLaughlin, Louise Parker, John D. Potter, John Gallacher, R. Kaaks, Bette Liu, Tim Sprosen, Aline Vilain, Stephanie A. Atkinson, Andrea Rengifo, Roscoe F. Morton, Andres Metspalu, H.‐Erich Wichmann, Mark S. Tremblay, Rex L. Chisholm, Andrés C. García‐Montero, Hans L. Hillege, J. Litton, Lyle J. Palmer, Markus Perola, Bruce H. R. Wolffenbuttel, Laura‐Maria Peltonen, Thomas J. Hudson · 发表于：International Journal of Epidemiology · 年份：2010 · DOI：10.1093/ije/dyq139 · 被引用次数：181 · 研究领域：Health, Environment, Cognitive Aging、Ethics in Clinical Research、Genetic Associations and Epidemiology

BACKGROUND: Vast sample sizes are often essential in the quest to disentangle the complex interplay of the genetic, lifestyle, environmental and social factors that determine the aetiology and progression of chronic diseases. The pooling of information between studies is therefore of central importance to contemporary bioscience. However, there are many technical, ethico-legal and scientific challenges to be overcome if an effective, valid, pooled analysis is to be achieved. Perhaps most critically, any data that are to be analysed in this way must be adequately 'harmonized'. This implies that the collection and recording of information and data must be done in a manner that is sufficiently similar in the different studies to allow valid synthesis to take place. METHODS: This conceptual article describes the origins, purpose and scientific foundations of the DataSHaPER (DataSchema and Harmonization Platform for Epidemiological Research; http://www.datashaper.org), which has been created by a multidisciplinary consortium of experts that was pulled together and coordinated by three international organizations: P³G (Public Population Project in Genomics), PHOEBE (Promoting Harmonization of Epidemiological Biobanks in Europe) and CPT (Canadian Partnership for Tomorrow Project). RESULTS: The DataSHaPER provides a flexible, structured approach to the harmonization and pooling of information between studies. Its two primary components, the 'DataSchema' and 'Harmonization Platforms',...