Today is World Duchenne Awareness Day. As of each year on September 7, the world raises global awareness on Duchenne and Becker muscular dystrophy (DMD and BMD). Two rare muscle wasting diseases that also affect the brain.
Individuals with Duchenne and Becker might face learning and behavioral challenges due to dystrophin loss in the brain. Although described in 1861 by Duchenne de Boulogne, brain involvement in DMD and BMD received little attention. Over the past decades, most research and care was directed towards the muscles. The World Duchenne Organization is therefore launching an online program ‘Duchenne and the Brain’ on September 7, 2pm GMT where experts on the disease share their knowledge and experience.
Duchenne Data Foundation is proud partner in BIND, an international project performing research in mouse models and individuals with Duchenne and Becker to gain a deeper understanding of this neurological aspect. We are leading the creation of a data management plan following the H2020 guidelines. It will address the relevant aspects of making data FAIR (findable, accessible, interoperable and re-usable), follow the principles of Open Science, including what data the project will generate, whether and how it will be made accessible for verification and re-use, and how it will be curated and preserved.
Next to this, DDF will define clear guidelines on the type of data and how it will be collected and stored, rules regarding privacy and ownership, together with the clear set up to ensure the access of the data via the European Open Data Portal.