FAIR Datasharing for Duchenne and FAIR Principles

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

Nature paper

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.


Stay updated

If you wish to stay updated on activities and developments regarding data sharing, FAIR data, Personal Health Train and the Duchenne Data Platform, subscribe to our newsletter here.

search previous next tag category expand menu location phone mail time cart zoom edit close