Organised by the CSA BrainHealth, the “Towards a Global Brain Health Data Space” webinar took place on 9 October 2025. The webinar gathered global experts to discuss regional needs and priorities for brain research and data sharing infrastructure, together with identifying synergies and opportunities for global collaboration towards a global brain health data space.
The webinar opened with remarks from Christina Müller, CSA BrainHealth Coordination Office, Project Management Agency, German Aerospace Centre (PT DLR), who provided an overview of the upcoming European Partnership for Brain Health. Given the complexity and sensitivity of brain health data, the European Partnership for Brain Health will strive to improve data sharing and ethical use, with a dedicated task on data standardisation and harmonisation.
“The European Health Data Space” – Keynote Presentation
A keynote on the European Health Data Space (EHDS) by Mélodie Bernaux, Policy Officer and Seconded National Expert, Directorate-General for Health and Food Safety, European Commission, followed in the form of a pre-recorded presentation. It covered a timeline of the EHDS Regulation and highlighted its three pillars, related to primary use of health data, secondary use of health data and electronic health record system requirements. In relation to secondary use of health data, researchers, innovators, and policymakers can benefit from streamlined and unified access to crossEuropean datasets, standardised application procedures, and ethical safeguards. Hence, the EHDS has the potential to improve data access and availability for research and innovation in Europe and beyond.
“Regional Needs and Priorities – Global Perspectives” – Panel Discussion
The first panel discussion was moderated by Frédéric Destrebecq, Executive Director, European Brain Council (EBC) and gathered leading experts from across the globe. Anthony Hannan, Florey Institute of Neuroscience and Mental Health, Co-Chair of the International Brain Initiative (IBI) and Co-Chair of the Australian Brain Alliance, opened the discussion by highlighting how neuroscience data is often underutilised due to challenges in accessibility, sharing, and metadata complexity. In this context, the IBI strives to optimise data use, establishing dedicated working groups to promote not only FAIR (Findable, Accessible, Interoperable, Reusable) data principles but also develop frameworks for ethical, cross-border data governance and sharing. These efforts also support lower-resource countries in contributing and benefiting from global datasets.
Damian Eke, University of Nottingham, Director of the African Brain Data Network, followed up emphasising that despite Africa’s rich genetic diversity, the continent remains underrepresented in global brain datasets. This is primarily due to a lack of skills and training for data generation and sharing, insufficient infrastructure for data storage and processing, and fragmented policies that restrict data within individual countries. Key priorities moving forward include capacity building, developing robust infrastructure, and establishing cross-border data governance frameworks.
Similar challenges were identified in the Latin American region by Luisa Rocha, Centre for Research and Advanced Studies (CINVESTAV), Principal Representative for Mexico and General Coordinator of the Latin American Brain Initiative. She highlighted chronic underfunding for brain research, the concentration of research capacities in a few countries, and the region’s unique contributions through genetic diversity and novel model organisms. She further emphasised the urgent need for enhanced training, network building, and strengthened global collaboration.
Tristan Glatard, Centre for Addiction and Mental Health (CAMH), Inaugural BMO Chair in Artificial Intelligence and Mental Health, described a different situation in Canada, where several brain health data repositories exist. Notably, the Brain Health Data Bank offers multimodal data with open access governed by a robust ethical framework. Key enablers driving brain data sharing in Canada include significant investments in technical infrastructure, a strong push for open access, and active promotion of data sharing by funders and research institutions.
Philippe Vernier, Joint-CEO of EBRAINS, concluded the discussion highlighting the role of EBRAINS as a key European infrastructure for data storage, sharing and use. He stressed how Europe’s current priorities include promoting open science practices that apply to data as well as software and tools and provide support to researchers to curate and share data in accordance with harmonised standards. The EHDS was noted as a promising framework to harmonise and unify fragmented efforts across European countries.
“Global Brain Health Data Space – Enablers and Barriers” – Panel Discussion
All speakers from the first panel continued the discussion in a second session focused on identifying opportunities and challenges for global collaboration, where they highlighted concrete steps and strategies needed to advance the development of a global brain health data space.
Several common barriers were identified, including the need to ensure data quality and compliance with regulatory requirements, as well as achieving interoperability across emerging repositories. Additional obstacles mentioned include limited government support in specific regions, the need for education and awareness-raising about the importance of data sharing, lack of coordination and fragmented funding landscapes.
All speakers discussed potential strategies to advance global collaboration on brain health data sharing, encompassing a top-down approach to set frameworks and infrastructure, while supporting bottom-up incentives for data sharers. Emphasis was placed on continuous cross-regional collaboration and open dialogue, leveraging the growing global interest among policymakers in brain health, and prioritising capacity development to ensure inclusive participation and long-term impact.
In conclusion, the discussion showcased the importance of collaboration and communication, the value of enriching datasets and filling data gaps from underrepresented countries, as well as boosting training and education. This webinar therefore provided a meaningful platform to foster international collaboration, promote open exchange, and build meaningful cross-border networks.