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. 2014 Mar;22(3):317-21.
doi: 10.1038/ejhg.2013.131. Epub 2013 Jun 19.

Data sharing in large research consortia: experiences and recommendations from ENGAGE

Isabelle Budin-Ljøsne, Julia Isaeva, Bartha Maria Knoppers, Anne Marie Tassé, Huei-yi Shen, Mark I McCarthy, Jennifer R Harris; ENGAGE Consortium
Collaborators

Data sharing in large research consortia: experiences and recommendations from ENGAGE

Isabelle Budin-Ljøsne et al. Eur J Hum Genet. 2014 Mar.

Abstract

Data sharing is essential for the conduct of cutting-edge research and is increasingly required by funders concerned with maximising the scientific yield from research data collections. International research consortia are encouraged to share data intra-consortia, inter-consortia and with the wider scientific community. Little is reported regarding the factors that hinder or facilitate data sharing in these different situations. This paper provides results from a survey conducted in the European Network for Genetic and Genomic Epidemiology (ENGAGE) that collected information from its participating institutions about their data-sharing experiences. The questionnaire queried about potential hurdles to data sharing, concerns about data sharing, lessons learned and recommendations for future collaborations. Overall, the survey results reveal that data sharing functioned well in ENGAGE and highlight areas that posed the most frequent hurdles for data sharing. Further challenges arise for international data sharing beyond the consortium. These challenges are described and steps to help address these are outlined.

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Figures

Figure 1
Figure 1
Hurdles encountered when sharing data in ENGAGE.
Figure 2
Figure 2
Concerns encountered when sharing data in ENGAGE.
Figure 3
Figure 3
Reasons for nonparticipation in an ENGAGE collaboration.
See this image and copyright information in PMC

References

    1. Birney E, Hudson TJ, Green ED, et al. Prepublication data sharing. Nature. 2009;461:168–170. - PMC - PubMed
    1. Knoppers BM, Harris JR, Tasse AM, et al. Towards a data sharing Code of Conduct for international genomic research. Genome Med. 2011;3:46. - PMC - PubMed
    1. National Institutes of Health NIH Data Sharing Policy,2007
    1. Organisation for Economic Co-operation and Development OECD principles and guidelines for access to research data from public funding,2007
    1. Wellcome Trust Wellcome Trust Data Sharing Policy,2013

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