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Meeting on Data Sharing for Duchenne

Step by Step towards Duchenne FAIR data

In 2019, we made a commitment towards making Duchenne data suitable for sharing by implementing the FAIR principles. In 2020, we commissioned FAIR Experts to support us in this endeavour. Today, we have come a long way but a lot more could be achieved with your active involvement.

For its members, the World Duchenne Organization is co-hosting this Data Sharing for Duchenne workshop, with the Duchenne Parent Project NL and the Duchenne Data Foundation. Few seats are open for those interested to learn more about data collection and FAIRification. Applications will be evaluated and accepted participants will receive more information.

During this workshop we will:

  • Inform you on our progress in making Duchenne resources FAIR
  • Inspire you by presenting some successful FAIR implementation projects
  • Invite you to an open discussion on how to overcome key challenges in data sharing


Meeting on Data Sharing for Duchenne

March 3, 2021, 1pm – 6pm CET

Apply to this workshop (deadline: February 15)


During this webinar, experts in the field of FAIR data will provide a global perspective on emerging data initiatives that comply with the FAIR principles. Guest-speakers from different fields will share their experiences with making specific projects FAIR. Lastly, we will encourage an open and honest discussion amongst the participants (representatives of patient organizations, clinicians, genomics researchers, industry partners, academia and health policymakers) to gain a better understanding on how to overcome some challenges with the implementation of FAIR data and services.

Let’s be inspired by the way the global research community reacted positively in 2020 and converged in their fight against the pandemic. There has been an explosion in data, data sharing and the need for Open Science – a pivotal moment in demonstrating the value of the internet of FAIR data and services. How can we keep exploiting this momentum to maximize the availability of FAIR data for Duchenne?