2017
DOI: 10.1016/j.pneurobio.2016.03.008
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Can data repositories help find effective treatments for complex diseases?

Abstract: There are many challenges to developing treatments for complex diseases. This review explores the question of whether it is possible to imagine a data repository that would increase the pace of understanding complex diseases sufficiently well to facilitate the development of effective treatments. First, consideration is given to the amount of data that might be needed for such a data repository and whether the existing data storage infrastructure is enough. Several successful data repositories are then examine… Show more

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Cited by 12 publications
(7 citation statements)
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References 77 publications
(88 reference statements)
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“…Full anonymization may not be possible for projects requiring phenotypic details [ 41 ]; other protections such as limited access and firewalls must therefore be considered so as not to lose “social licence” for these types of projects [ 42 – 44 ]. Both researchers and patients should have input to the next generation of data repositories and projects to shape them towards the kinds of questions that remain outstanding, such as capturing traits as well as diseases for research compatible with the USA’s National Institute of Mental Health Research Domain Criteria (RDoC) paradigm [ 45 , 46 ].…”
Section: Discussionmentioning
confidence: 99%
“…Full anonymization may not be possible for projects requiring phenotypic details [ 41 ]; other protections such as limited access and firewalls must therefore be considered so as not to lose “social licence” for these types of projects [ 42 – 44 ]. Both researchers and patients should have input to the next generation of data repositories and projects to shape them towards the kinds of questions that remain outstanding, such as capturing traits as well as diseases for research compatible with the USA’s National Institute of Mental Health Research Domain Criteria (RDoC) paradigm [ 45 , 46 ].…”
Section: Discussionmentioning
confidence: 99%
“…; Michener ); medical research, neuroimaging, and genomics (Walport and Brest ; Warren ; Poline et al. ; Kaye and Hawkins ; Farber ); and materials science (Graulis et al. ; Lafuente et al.…”
Section: Current Trends In Data Opennessmentioning
confidence: 99%
“…Without sufficient access to data, scientific analyses cannot be replicated and subsequent research cannot build upon previous results, both of which undermine the foundation of scientific progress. As a consequence, data archiving and sharing have become a cross-cutting issue across all scientific fields, including: r physics (Hey and Payne 2015); r political science (Gherghina and Katsanidou 2013); r bioinformatics (Hothorn and Leisch 2011); r ecology and biodiversity research (Costello et al 2013;Michener 2015); r medical research, neuroimaging, and genomics (Walport and Brest 2011;Warren 2016;Poline et al 2012;Kaye and Hawkins 2014;Farber 2017); and r materials science (Graulis et al 2009;Lafuente et al 2016).…”
Section: Trends Across Scientific Fieldsmentioning
confidence: 99%
“…There is an apparent need to allow pluralism of investigation, discovery and application, while maintaining standards of the scientific method. Consensus standards often emerge as a result of data-sharing [ 44 ], which may become a practical challenge of its own.…”
Section: Methodological Challengesmentioning
confidence: 99%