Promoting the Broader Sharing of DMD Brain Data to Enhance Research: Duchenne Data Foundation and EBRAINS Collaboration

The collaboration between DDF and EBRAINS brings together their respective resources to spearhead actions to facilitate data sharing among researchers in the fields of dystrophinopathies and neuroscience. Specifically, FAIR processes are defined and implemented for findability and accessibility of DMD/BMD datasets in the DDF Duchenne Data Repository (DDR) and the EBRAINS Data and Knowledge services. This interlinkage between DDF and EBRAINS databases will allow researchers to employ EBRAINS tools for the analysis, sharing, and publication of these invaluable datasets for research purposes.

To describe the DMD/BMD brain-related datasets, the collaboration will leverage the openMINDS metadata model developed by partners of the EBRAINS research infrastructure. Additionally, efforts have been planned to make DMD data accessible to the scientific community and to construct potential predictive models for DMD evolution, diagnosis, and treatment,leveraging EBRAINS analytics, modelling, and simulation expertise and tools. DDF and EBRAINS are also collaborating on the BIND project. BIND is an initiative focused on elucidating the role of dystrophin in the brain. Our goal in this project is to collect a large range of DMD/BMD patient and animal model data. In the partnership with EBRAINS, we are developing advanced tools for the integration, analysis, and mining of these heterogeneous sources of data.

Elvina Sakellariou, DDF Project Manager, expresses her enthusiasm regarding the collaboration: “The BIND project represents a significant milestone as the first large-scale endeavor aimed at improving the characterization of brain involvement in DMD/BMD. By leveraging EBRAINS' research infrastructure and tools, we are facilitating the discoverability, sharing and integration of valuable brain data related to DMD/BMD. This collaboration is a testament to our shared commitment to improving the lives of individuals affected by dystrophinopathies through the optimal and FAIR re-use of DMD/BMD data.”

About the Duchenne Data Foundation (DDF)

Established in 2018, the Duchenne Data Foundation (DDF) is a non-profit organization dedicated to consolidating all sources of data concerning dystrophinopathies and making a significant impact on the global DMD community. Since its inception, the DDF has been at the forefront of numerous initiatives and projects aimed at facilitating data connection and collection for dystrophinopathies. DDF has developed the Duchenne Data Repository, a repository designed with the FAIR (Findable, Accessible, Interoperable, and Reusable) principles to enable collaboration, curation, and publication of dystrophinopathy data.

About the EBRAINS Infrastructure

EBRAINS serves as the gateway for researchers to access services developed and powered by the EU-funded Human Brain Project. As a research infrastructure, EBRAINS offers digital tools and services that address challenges in brain research and the development of brain-inspired technologies. Developed by researchers, for researchers, these tools empower scientists to collect, analyze, share, and integrate brain data, as well as perform modeling and simulation of brain function.