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

Verhaart IEC, ‘t Hoen PAC, Roos M, Vroom E. Meeting on data sharing for Duchenne 21–22 March 2019 Amsterdam, the Netherlands. Neuromuscular Disorders 2019;29:800-810

Introduction

Thirty-six representatives of academia, clinics, industry and patient organisations from 10 countries (Belgium, the Netherlands, Spain, Italy, Greece, France, United Kingdom, Switzerland, United States, Canada) attended the ‘Meeting on
data sharing for Duchenne’ organised by the Duchenne Parent Project. During the meeting the current status, opportunities
and challenges of data sharing in the Duchenne field were discussed. The aim of the meeting was to optimize the (re)use of data from DMD patients, collected by different stakeholders and to create a declaration that will guide future steps towards Duchenne data being more findable, accessible, interoperable and reusable, for humans and computers (FAIR) as a new paradigm for efficient data sharing and analysis. This includes
a discussion on strategies to (1) convince all parties of the necessity of better data sharing and getting them involved,
(2) raise awareness of newer concepts of data sharing [1] , (3) making data suitable for sharing by implementing FAIR
principles [1] and (4) conceptualize ways to optimize data sharing platforms to achieve the goals 1–3.

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