Towards a Global Brain Health Data Space: Global Experts unite to Advance Collaborative Neuroscience

On 9 October 2025, the CSA BrainHealth initiative hosted the international webinar “Towards a Global Brain Health Data Space”. The event, moderated by Frédéric Destrebecq, Executive Director of the European Brain Council (EBC), brought together leading neuroscience experts from around the world (including Europe, Africa, Latin America, Canada, Australia) to discuss how to bridge national priorities and advance collaboration in brain data sharing and governance. 

Opening the session, Christina Müller from the DLR Project Management Agency highlighted the mission of the upcoming European Partnership for Brain Health, set to launch in 2026, to develop innovative solutions for the medical, technological, and social challenges posed by neurological and mental disorders in Europe and beyond. 

The keynote presentation by Mélodie Bernaux, Policy Officer at DG SANTE, introduced the European Health Data Space (EHDS) - a major EU initiative designed to improve the use of electronic health data built on three core actions: enabling the primary use of health data to strengthen healthcare delivery and patient rights; promoting the secondary use of health data for research, innovation, and policy-making; and establishing common requirements for electronic health record (EHR) systems across the EU to ensure interoperability and create a unified digital health market. Bernaux noted that this EU federated model could serve as a template for global cooperation. 

The panel “Regional Needs and Priorities – Global Perspectives” explored diverse experiences from different regions. Speaking about the European experience, Philippe Vernier, Joint CEO of EBRAINS, underlined the crucial role of digital research infrastructures in fostering responsible and interoperable data use and global brain health research. He highlighted EBRAINS’ efforts in setting metadata standards and structuring data for reuse in research contexts. He also emphasised that researchers must be educated to make their data FAIR - Findable, Accessible, Interoperable, and Reusable. He identified three key bottlenecks: insufficient secure data spaces, limited data curation teams, and complex compliance requirements, and called for stronger governmental support to overcome them and disseminate data in the most efficient and responsible way. Prof. Vernier added that “we must also show concrete use cases to make these efforts tangible: only then can we move from abstract principles to real global collaboration.” 

Anthony Hannan, from the University of Melbourne and the Australian Brain Alliance, and co-chair of the International Brain Initiative, called for stronger collaboration between international brain initiatives to optimise the enormous amounts of datasets generated worldwide by neuroscientists and researchers. He noted that “we are guilty of creating large datasets without fully utilising them”, calling for “increased international data sharing to ensure global gains from investments in data generation”.  

The Director of the African Brain Data Network, Damian Okaibedi Eke, stressed Africa’s unique regional challenges, explaining that “African datasets are largely missing from global repositories, despite the African population representing the deepest human genetic diversity and variations in brain development”. He stressed that the lack of local infrastructures and technical capacity hinders both data generation and sharing, calling for “structured training and fellowship programmes and interoperable research platforms like EBRAINS” to bridge the gap. 

From Latin America, Luisa Rocha, from CINVESTAV and the Latin American Brain Initiative drew attention to the region’s strengths, including genetic diversity, unique research models on different disorders, such as hypoxia studies in Peru and Amazonia, creativity and highly trained students. She noted that, given the low investments in brain research across Latin America, researchers need stronger financial and policy support to continue their work and connect with the global neuroscience community. 

Tristan Glatard, from Krembil Centre for Neuroinformatics, CAMH, and the Canadian Brain Research Strategy, described the growing Canadian ecosystem of open databases, which generated up to 20 major platforms sharing patient data - including MRI, PET, and molecular datasets from several thousand research participants. He stressed that these research and technical infrastructures are supported by governmental investment and philanthropic funding and operate in full compliance with ethics and data privacy regulations. Glatard also explained that open science policies have become key enablers, with some institutions making data sharing mandatory, and pointed out that indigenous data governance is an integral part of Canada’s research ethics landscape.  

Closing the discussion, participants agreed that training researchers, governmental investments, data governance, and interoperable databases are crucial to achieve a truly Global Brain Health Data Space.  

EBRAINS continues to play a leading role in advancing open, ethical, and FAIR data sharing practices in neuroscience, helping to turn fragmented datasets into a shared global resource for brain health research.