New Report: How patient organizations can drive FAIR data efforts to facilitate research and healthcare

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.

Click here to read the full report

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.

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 Patient Reported Outcomes 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 technical barriers, 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.

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, pharmaceutical companies, regulators, FAIR Experts and EU organizations. The wide spectrum of stakeholders shows convergence of interests, alignments of efforts and willingness to overcome any obstacles in order to build a solid ecosystem for FAIR data sharing of patient-derived data (e.g. disease or patient registries) at a European level – this is what rare disease patients like DMD/BMD really want.

For any additional information, please contact Nawel van Lin (nawel [at]