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. 2018 Jul 24;13(7):e0200926.
doi: 10.1371/journal.pone.0200926. eCollection 2018.

Fostering population-based cohort data discovery: The Maelstrom Research cataloguing toolkit

Julie Bergeron  1 , Dany Doiron  1   2   3 , Yannick Marcon  1 , Vincent Ferretti  4 , Isabel Fortier  1
Affiliations

Fostering population-based cohort data discovery: The Maelstrom Research cataloguing toolkit

Julie Bergeron et al. PLoS One. .

Abstract

Background: The lack of accessible and structured documentation creates major barriers for investigators interested in understanding, properly interpreting and analyzing cohort data and biological samples. Providing the scientific community with open information is essential to optimize usage of these resources. A cataloguing toolkit is proposed by Maelstrom Research to answer these needs and support the creation of comprehensive and user-friendly study- and network-specific web-based metadata catalogues.

Methods: Development of the Maelstrom Research cataloguing toolkit was initiated in 2004. It was supported by the exploration of existing catalogues and standards, and guided by input from partner initiatives having used or pilot tested incremental versions of the toolkit.

Results: The cataloguing toolkit is built upon two main components: a metadata model and a suite of open-source software applications. The model sets out specific fields to describe study profiles; characteristics of the subpopulations of participants; timing and design of data collection events; and datasets/variables collected at each data collection event. It also includes the possibility to annotate variables with different classification schemes. When combined, the model and software support implementation of study and variable catalogues and provide a powerful search engine to facilitate data discovery.

Conclusions: The Maelstrom Research cataloguing toolkit already serves several national and international initiatives and the suite of software is available to new initiatives through the Maelstrom Research website. With the support of new and existing partners, we hope to ensure regular improvements of the toolkit.

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Conflict of interest statement

I have read the journal's policy and the authors of this manuscript have the following competing interests: YM owns Epigeny, a company that offers services based on the Opal and Mica software described in this article. This does not alter our adherence to PLOS ONE policies on sharing data and materials.

Figures

Fig 1
Fig 1. Conceptual model used to document cohort designs and variable content.
See this image and copyright information in PMC

References

    1. Wellcome Trust. Enhancing Discoverability of Public Health and Epidemiology Research Data [Internet]. London, UK; 2017 [cited 2017 Nov 9]. Available from: https://wellcome.ac.uk/sites/default/files/enhancing-discoverability-of-...
    1. Roger VL, Boerwinkle E, Crapo JD, Douglas PS, Epstein JA, Granger CB, et al. Strategic Transformation of Population Studies: Recommendations of the Working Group on Epidemiology and Population Sciences From the National Heart, Lung, and Blood Advisory Council and Board of External Experts. Am J Epidemiol. 2015. March 15;363–8. 10.1093/aje/kwv011 - DOI - PMC - PubMed
    1. Wilkinson MD, Dumontier M, Aalbersberg IjJ, Appleton G, Axton M, Baak A, et al. The FAIR Guiding Principles for scientific data management and stewardship. Sci Data. 2016. March 15;3:160018 10.1038/sdata.2016.18 - DOI - PMC - PubMed
    1. Collins R. What makes UK Biobank special? The Lancet. 2012. March 31;379(9822):1173–4. - PubMed
    1. Kirkland SA, Griffith LE, Menec V, Wister A, Payette H, Wolfson C, et al. Mining a Unique Canadian Resource: The Canadian Longitudinal Study on Aging. Can J Aging Rev Can Vieil. 2015. September;34(3):366–77. - PubMed

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