Periodic Reporting for period 4 - EBRA (European Brain Research Area)
Berichtszeitraum: 2021-11-01 bis 2022-10-31
More than one out of two Europeans currently live with a brain disorder, neurological and mental alike. Despite enormous effort from the scientific and clinical community over the last decades, the challenges in the brain space remain tremendous, spurred by the high prevalence and increasing disease burden. This showcases the immensity of the problem, and it makes clear that brain research and brain health need to be promoted and recognised as a priority by European society. The European Union (EU) has already undertaken some important steps to boost brain research initiatives with partners around the world, including the EU-funded project “the European Brain Research Area (EBRA)” (2018-2022), led by the European Brain Council, in partnership with the EU Joint Programme on Neurodegenerative Diseases (JPND), the Network of European Funding for Neuroscience Research (ERA-NET NEURON) and the Human Brain Project (HBP). Tackling the challenge posed by the complexity of the brain is possible only through close collaboration and cooperation within the community. The involvement of all relevant stakeholders in the brain area is required, including basic, translational, and clinical scientists, neurologists, neurosurgeons, psychiatrists, industry, regulators, funders, and policymakers. The role of people with brain disorders, their families and citizens cannot be underestimated here and is of utter importance. Building networks and matchmaking with key experts in the field should be a priority for all the stakeholders, including policymakers. This will reduce fragmentation in the brain space, contribute to a better understanding of the brain, and will eventually improve the lives of persons with brain disorders, their families and society as a whole.
The European Research Inventory and Mapping Report shows brain research activities funded at the European level over the last decades, examining the past and current state of brain research in Europe. The statistics demonstrate that annual fundings in Europe can reach significant levels to support highly competitive research projects reaching €550 million in 2014-2018. As the challenges posed by brain disorders remain high, continued funding of research consortia is key for a lasting impact on collaboration and innovation in the European and global brain research area. Attention should be given to initiatives that reduce fragmentation and increase collaboration, to animal models, to increasing public patient engagement and encouraging and to enabling data sharing. Through EBRA, recommendations on future areas for excellent, innovative, and translational research in the brain space were provided. To identify the gaps in currently existing brain research and set the priorities for the future, EBRA, working with experts in the brain space has developed the Shared European Brain Research Agenda (SEBRA). Representatives from the European Brain Council systematically presented the Shared European Brain Research Agenda at several international conferences and global meetings like the IBRO World Congress, the United Nations General Assembly Side Sessions: “Science Digital @ UNGA75”, Science Summit at the 77th UN General Assembly to foster the global brain research agenda. To promote cooperation and exchange in all areas of brain research, the EBRA project regularly had a ‘‘Call for Clusters” to promote cooperation and exchange among specific brain research projects. Six clusters have been selected: BRAINFOOD, EPICLUSTER, PSMD, PREMOS, TRISOMY21 and ECIB. The 6 clusters organised 18 consensus meetings, workshops, and policy conferences. All relevant stakeholders were systematically involved in those meetings including large research initiatives, infrastructures as well as relevant public, private and philanthropy funding bodies and regulatory authorities, in order to ensure effective implementation and impact of this coordination action. Importantly, by highlighting the importance of communication and dissemination of the cluster activities and outcomes on the EBRA website and social media, the visibility of the cluster coordinator, community and research field increased enormously. To enable and accelerate the translation of breakthroughs in brain research into relevant clinical applications, the European Brain Council created the Brain Innovation Days (BIDs) in 2020. The BIDs serve as an instrument to bring together the wider brain community, raising awareness on the importance of brain research and brain innovation. The event brings together both key stakeholders and the broader public through these accessible materials. After three digital sessions during the COVID-19 pandemic, a first in-person event took place in October 2021, under the auspices of the European Brain Council and EBRA and a second in-person event took place in October 2022 in conjunction with the EBRA final conference. The BIDs are now an annual event and will be organised again in October 24-25, 2023.
Crucial stakeholders in the EBRA project were the experts by experience and patient representatives . The EBRA patient involvement strategy was fully embedded and implemented in all EBRA activities. Based on this experience, the European Brain Council wrote “the recommendations for patient involvement best practice”.
Crucial stakeholders in the EBRA project were the experts by experience and patient representatives . The EBRA patient involvement strategy was fully embedded and implemented in all EBRA activities. Based on this experience, the European Brain Council wrote “the recommendations for patient involvement best practice”.
Impact was reached at 3 levels: scientific, societal, and economic. Scientifically, the EBRA project raised awareness on the brain research landscape and on the ongoing societal challenges for researchers, health professionals and scientific global organizations. The visibility of the cluster coordinator, community and research field made other researchers aware of the importance of being involved in research networks and of joining coordination initiatives in the future. In addition, with many of the brain-related flagship projects ending in 2023 – including JPND, NEURON and the Human Brain Project – the need for continued prioritisation of European-led, coordinated collaborations is clear. The challenge of getting Member States and national funding councils to commit to long-term partnerships remains. Unification in the brain space is now more important than ever and a coordinated partnership is the only answer to avoid fragmentation in the field and move forward together. At the societal level, awareness was raised on brain diseases and research for patients and civil society through online material shared via the website and social media, including publications, interviews, webinars, podcasts and videos with leaders from the EBRA community. Patients and their caregivers will also have access to the recommendations on patient involvement best practice. This will contribute to an improvement of Quality of Life in patients and their families. At the economic level, the launch of the Brain Innovation Days of SMEs and start-ups in brain research, will lead to the development of novel tools and approaches to advance our understanding of unknown basic brain functions, as well as opportunities to generate novel therapeutic approaches. Such delivery of new health interventions in brain disorders will eventually result in a reduction in the burden of brain diseases in Europe and tackle this major societal challenge in Europe and worldwide.