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Meeting on data sharing for Duchenne 21–22 March 2019 Amsterdam, the Netherlands

  • Ingrid E.C. Verhaart
    Correspondence
    Corresponding author at: Duchenne Parent Project NL, the Netherlands.
    Affiliations
    Duchenne Parent Project NL, the Netherlands

    Department of Human Genetics, Leiden University Medical Center, Leiden, the Netherlands
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  • Author Footnotes
    1 Both authors contributed equally to this work.
    Peter A.C. ‘t Hoen
    Footnotes
    1 Both authors contributed equally to this work.
    Affiliations
    Center for Molecular and Biomolecular Informatics, Radboud Institute for Molecular Life Sciences, Radboud University Medical Center, Nijmegen, the Netherlands
    Search for articles by this author
  • Author Footnotes
    1 Both authors contributed equally to this work.
    Marco Roos
    Footnotes
    1 Both authors contributed equally to this work.
    Affiliations
    Department of Human Genetics, Leiden University Medical Center, Leiden, the Netherlands
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  • Elizabeth Vroom
    Affiliations
    Duchenne Parent Project NL, the Netherlands

    World Duchenne Organisation (UPPMD), the Netherlands
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  • On Behalf of theWorkshop Participants
  • Author Footnotes
    1 Both authors contributed equally to this work.
Published:August 28, 2019DOI:https://doi.org/10.1016/j.nmd.2019.08.010

      Highlights

      • A workshop has been held on data sharing in Duchenne muscular dystrophy.
      • Currently data is scattered, hard to find and access, causing a huge loss of data.
      • Data should become Findable, Accessible, Interoperable and Reusable (FAIR).
      • At the end of the workshop a Duchenne FAIR declaration has been drafted.

      Keywords

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