The World Duchenne Organisation and several of its members have been advocating for better use of Duchenne data, which is currently kept in silo’s. WDO does this by bringing this subject to the attention of the EU lobby, by developing tools enabling better datasharing, such as the Duchenne Data platform, and organizing meetings on how to enhance data sharing for Duchenne. On March 21 and 22, 2019 during a meeting the FAIR initiative, the Personal Health Train and next steps related to data visiting were discussed at our meeting in Amsterdam attended by representatives of registries, patient advocate leaders, clinicians, scientists, companies and regulators.
About Fair and Personal Health Train
In 2016, the ‘FAIR Guiding Principles for scientific data management and stewardship’ were published in Scientific Data. The authors intended to provide guidelines to improve the Findability, Accessibility, Interoperability, and Reuse of digital assets.
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