2020
DOI: 10.1016/j.dcn.2020.100834
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FAIR, safe and high-quality data: The data infrastructure and accessibility of the YOUth cohort study

Abstract: Highlights YOUth is a longitudinal cohort study in the Netherlands that aims to produce and safely store FAIR and high-quality data. We share our experience and expertise in setting up a high-quality research data infrastructure for sensitive cohort data. We describe our procedures and the technical aspects of our data and data infrastructure. We highlight the importance of collaboration between organizations.

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Cited by 8 publications
(28 citation statements)
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“…This presents the interrelation between the technical component, support services, education, and culture. But the implementation of them is also connected with financial challenges (Cox et al, 2019; Hamad et al, 2021; Zondergeld et al, 2020). Under this perspective a strategy which takes the potential investments, long-term costs, options for financing, and aims into account is important (Jones, 2014; Whyte, 2014).…”
Section: Discussionmentioning
confidence: 99%
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“…This presents the interrelation between the technical component, support services, education, and culture. But the implementation of them is also connected with financial challenges (Cox et al, 2019; Hamad et al, 2021; Zondergeld et al, 2020). Under this perspective a strategy which takes the potential investments, long-term costs, options for financing, and aims into account is important (Jones, 2014; Whyte, 2014).…”
Section: Discussionmentioning
confidence: 99%
“…One of the major challenges for RDM can be seen in financial resources Hamad et al, 2021;Zondergeld et al, 2020). To deal with this, a business case which takes potential investments, long-term costs, as well as options for the financing into account is a reasonable approach Whyte, 2014).…”
Section: Financementioning
confidence: 99%
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“…Moreover, the importance of data management is emphasised by a paper on how we incorporated the FAIR Data Principles to make data findable, accessible, interoperable and reusable for the YOUth cohort. Zondergeld et al (2020) describe technical, organizational and financial challenges that go along the production and safe storage of FAIR and high-quality data for sustainable science. Methodological issues that arise when applying eye-tracking, a much used neurocognitive measure in child research, are discussed in the paper by Hessels and Hooge (2019) .…”
Section: Overviewmentioning
confidence: 99%
“…Third, the development of research infrastructures that accommodate data management and stewardship (Houssos et al, 2014;Shoshani and Rotem, 2009;Zondergeld et al, 2020).…”
Section: Introduction -9 -mentioning
confidence: 99%