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How Patient Organizations Can Drive FAIR Data Efforts to Facilitate Research and Health Care

Last March, the World Duchenne Organization in collaboration with Duchenne Data Foundation organized the second Meeting on FAIR Data Sharing for Duchenne. During this meeting, 120 participants from 22 countries discussed how they could drive FAIR data efforts to facilitate research and healthcare. The report is available now.

Click here to read the full report (link)

Optimal (re)use of data

In order to improve care and get insights to enhance future research optimal (re)use of data collected from Duchenne and Becker patients is of the essence. For this reason, the Duchenne and Becker Muscular Dystrophy (DMD and BMD) community has been working on making DMD/BMD data FAIR since 2018. FAIR Data means your data is Findable, Accessible, Interoperable, and Reusable for both humans and machines. Patient organizations are key drivers of the FAIRification process in practice, and dialogue with stakeholders is critical to success.

Collecting DMD/BMD data

Data of people living with Duchenne and Becker Muscular Dystrophy (DMD and BMD) are collected by researchers, in the health system and by themselves through PROs and wearables. In 2019, the World Duchenne Organization published the Duchenne FAIR Declaration, highlighting the need for optimal (re)use of data.

Currently the data are often kept in different data systems. Use and reuse is prevented by system inoperability, or problems with ownership, control, data protection and security. The failure of connecting data hampers the discovery of new diagnostics, treatments, healthcare policies, and the use of data by the patient themselves. Each which can benefit people living with DMD and BMD greatly.

Meeting report

The report of the second virtual meeting summarizes the presentations and discussions of the meeting on March 3. In addition to this, it provides an overview of the key lessons learned since the first meeting, and outlines the next steps. Participants included representatives from patient organizations, clinicians, clinical and academic researchers, FAIR experts, pharmaceutical companies, regulators, and EU organizations.