Deliverable 8.7: Liaison with related projects and initiatives: Intermediate report

Deliverable 8.7 Liaison with related projects and initiatives: Intermediate report HetERogeneous sEmantic Data integratIon for the guT-bRain interplaY DELIVERABLE 8.7 28.07.2025, VERSION 1.0 GA 101137074 3 | 21 EXECUTIVE SUMMARY This document outlines the activities of alignment of HEREDITARY with other initiatives with similar or complementary objectives carried out by EBC between month 1 and month 20 in the framework of the Task 8.4 (Liaison with related projects and initiatives) under Work Package 8 (Exploitation, Innovation, Communication and Dissemination). Through the engagement of stakeholders relevant to the project scope, HEREDITARY liaison activities aim to promote coordination and collaboration among related EU and global initiatives by: • Generating synergies between EU research networks • Identifying and addressing mutual drivers and barriers • Accelerating the exchange of experience and knowledge As lead of HEREDITARY liaison activities, EBC has facilitated relations with relevant EU players to foster the mainstreaming of innovative EU brain research in policymaking. DELIVERABLE 8.7 28.07.2025, VERSION 1.0 GA 101137074 4 | 21 DELIVERABLE 8.7 28.07.2025, VERSION 1.0 GA 101137074 5 | 21 DOCUMENT INFORMATION Deliverable ID D8.7 Deliverable Title Liaison with related projects and initiatives: Intermediate report Work Package WP8 Lead Partner European Brain Council (EBC) Due date 31.08.2025 Date of submission 28.07.2025 Type of deliverable R Dissemination level PU AUTHORS Name Organisation Dieyenaba Faye European Brain Council (EBC) Chiara Lovati (Internal Reviewer) OBSERVA Giuseppe Pellegrini (Internal Reviewer) OBSERVA Anna Romanovych (Contributor) UNIPD REVISION HISTORY Version Date Author Document history/approvals 0.1 07.07.2025 Dieyenaba Faye First draft 0.2 22.07.2025 Chiara Lovati, Giuseppe Pellegrini Reviewed first draft 0.3 22.07.2025 Dieyenaba Faye Second draft integrating changes 1.0 28.07.2025 Anna Romanovych Finalised deliverable Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union. Neither the European Union nor the granting authority can be held responsible for them. DELIVERABLE 8.7 28.07.2025, VERSION 1.0 GA 101137074 6 | 21 Contents 1 Introduction ............................................................................................................ 8 2 Methodology .......................................................................................................... 9 2.1 Mapping of projects addressing multimodal health data integration, neurodegenerative disorders and the gut-brain axis ................................................... 9 2.2 Shortlist of projects and initiatives relevant to HEREDITARY scope ............ 10 2.3 Identification of common interest points and potential areas of collaboration 12 2.4 Design and implementation of a liaison plan ................................................ 13 2.4.1 September 2024: Strategic Meeting on Challenges in Multimodal Health Data Integration (virtual) ........................................................................................ 13 2.4.2 October 2024: Consensus Meeting on Priority Areas and Joint Activities (virtual) 15 2.4.3 November 2024: BRAINTEASER Impact & Exploitation Workshop “Harnessing AI for Brain Health: Lab to Market to Society” (Brain Innovation Days, Brussels) ................................................................................................................ 16 2.4.4 May 2025: Task Force 1.1 Alignment Meeting (virtual) ............................. 18 2.4.5 May 2025: HEREDITARY, LETHE and BRAINTEASER Webinar “Federated Learning for Neurodegenerative Disease Research: A New Path to Risk Reduction and Better Care” .................................................................................................... 19 2.4.6 June 2025: Brain Talks Podcast “HEREDITARY project: trustworthy AI in advancing brain research” ..................................................................................... 20 3 Conclusion ........................................................................................................... 21 DELIVERABLE 8.7 28.07.2025, VERSION 1.0 GA 101137074 7 | 21 List of Tables Table 1 Bilateral meetings with HEREDITARY-related projects - calendar ................... 12 Table 2 Repartition of the HEREDITARY-related projects representatives in the ”Harnessing Health Data” Cluster’s Task Forces .......................................................... 15 Table 3 Agenda of the BRAINTEASER Impact & Exploitation Workshop – including the intervention of HEREDITARY Coordinator in Session 1 ............................................... 17 Table 4 Agenda of the HEREDITARY, LETHE and BRAINTEASER Webinar “Federated Learning for Neurodegenerative Disease Research: A New Path to Risk Reduction and Better Care” – featuring Umberto Manera, HEREDITARY & BRAINTEASER Clinical Partner .......................................................................................................................... 19 List of Figures Figure 1 HEREDITARY methodology - five-layered structure ........................................ 8 Figure 2 Consortium consultation on HEREDITARY liaison objectives - responses to Question 1 .................................................................................................................... 10 Figure 3 Consortium consultation on HEREDITARY liaison objectives - responses to Question 2 ..................................................................................................................... 11 Figure 4 Consortium consultation on HEREDITARY liaison objectives - responses to Question 3 .................................................................................................................... 12 Figure 5 Overview of the projects represented in the HEREDITARY co-led Strategic Meeting ......................................................................................................................... 14 Figure 6 Speaker lineup of the BRAINTEASER Impact & Exploitation Workshop - including HEREDITARY Project Officer at HaDEA and HEREDITARY Coordinator ..... 16 DELIVERABLE 8.7 28.07.2025, VERSION 1.0 GA 101137074 8 | 21 1 Introduction Over the past decade, increasing EU funding for brain research has enabled the emergence of numerous projects with innovative potential. Despite major advances in brain research, valuable findings may still fail to reach or impact real-world practice, limiting their potential benefit. Liaison activities bring together EU and global projects and initiatives with similar or complementary objectives to enhance synergies and avoid overlap of activities. Running from January 2024 to December 2027, HEREDITARY (HetERogeneous sEmantic Data integratIon for the guT-bRain interplaY) is an EU-funded research project aiming to harmonise clinical, genomic and environmental data to provide deeper insight into the gut-brain axis and its impact on neurodegenerative disorders. As illustrated in Error! Reference source not found., HEREDITARY seeks to empower the development of more effective treatment and diagnosis strategies through advanced federated analytics. Figure 1 HEREDITARY methodology - five-layered structure As part of HEREDITARY Work Package 8 (Exploitation, Innovation, Communication and Dissemination), Task 8.4 (Liaison with related projects and initiatives) focuses on strengthening cooperation between HEREDITARY and relevant EU projects and initiatives. To this end, the European Brain Council (EBC) has been leveraging, as Task Leader, its extensive network of key players in the EU brain space (encompassing patient organisations, scientific and professional societies as well as industry partners). DELIVERABLE 8.7 28.07.2025, VERSION 1.0 GA 101137074 9 | 21 2 Methodology HEREDITARY liaison with related projects and initiatives follows a stepwise approach: 1. Mapping of projects addressing multimodal health data integration, neurodegenerative disorders and the gut-brain axis 2. Shortlist of projects and initiatives relevant to HEREDITARY scope 3. Identification of common interest points and potential areas of collaboration 4. Design and implementation of a liaison plan 2.1 Mapping of projects addressing multimodal health data integration, neurodegenerative disorders and the gut-brain axis Modern societies generate a significant amount of data (real-world data). Linking healthrelated real-world data and research data from multiple sources (multimodal health data integration) has showed high potential in numerous disease areas including neurodegenerative disorders. HEREDITARY and other projects similar in nature and goals participate, altogether, in harnessing the value of health data to, ultimately, advance medical research and improve patient outcomes. In the early stages of the project, EBC put together and provided the consortium with a comprehensive list of 15 potentially relevant projects with a focus on multimodal health data integration, neurogenerative disorders and the gut-brain axis: • Projects funded under the same topic as HEREDITARY: HORIZON-HLTH-2023TOOL-05-04 - Better integration and use of health-related real-world and research data, including genomics, for improved clinical outcomes o WISDOM – Well-being improvement through the Integration of healthcare and reSearch Data and models with Out border for chronic iMmunemediated diseases o BETTER – Federated learning framework for decentralised AI for realworld health data o CVDLINK – A federated paradigm of real-world data sources utilization for the empowerment of diagnosis, prognosis and risk assessment of cardiovascular conditions o NextGen – Next generation tools for Genome-centric Multimodal data integration in personalised cardiovascular medicine • Projects funded under the same main programme: HORIZON.2.1.5 - Tools, Technologies and Digital Solutions for Health and Care, including personalised medicine o COMFORTage – Prediction, Monitoring and Personalized Recommendations for Prevention and Relief of Dementia and Frailty o SPIDeRR – Stratification of patients with musculoskeletal symptoms using advanced integrative data modelling o CoMPaSS-NMD – Computational Models for new Patients Stratification Strategies of Neuromuscular Disorders o SQUEEZE – Maximising Impact of Prescription Drugs in Rheumatoid Arthritis DELIVERABLE 8.7 28.07.2025, VERSION 1.0 GA 101137074 16 | 21 As outcomes of the collaborations listed above, joint communications including stakeholder engagement activities and scientific publications will be designed at a later stage. 2.4.3 November 2024: BRAINTEASER Impact & Exploitation Workshop “Harnessing AI for Brain Health: Lab to Market to Society” (Brain Innovation Days, Brussels) In November 2024, HEREDITARY, BRAINTEASER and AI-Mind reconvened at Brain Innovation Days – an EBC-led two-day event designed to inspire collaboration and accelerate innovation across the brain ecosystem. In the context of BRAINTEASER Impact & Exploitation Workshop “Harnessing AI for Brain Health: Lab to Market to Society” on 13 November 2024, HEREDITARY Coordinator was invited to intervene, as illustrated in Figure 6. Figure 6 Speaker lineup of the BRAINTEASER Impact & Exploitation Workshop - including HEREDITARY Project Officer at HaDEA and HEREDITARY Coordinator Table 3 shows the agenda of the event, which notably featured a keynote from Claudia Prettner, Project Advisor, BRAINTEASER and HEREDITARY Project Officer at the European Health and Digital Executive Agency (HaDEA), who introduced the audience to HaDEA and its portfolio of health research projects – with a focus on current and future brain health research. Her presentation also stressed the role of EU Research & Innovation in contributing to effective prevention strategies and better care of brain disorders, as well as the role of the EU brain community in enabling evidence-based policymaking to counter today’s brain health challenges. DELIVERABLE 8.7 28.07.2025, VERSION 1.0 GA 101137074 17 | 21 Table 3 Agenda of the BRAINTEASER Impact & Exploitation Workshop – including the intervention of HEREDITARY Coordinator in Session 1 BRAINTEASER Impact & Exploitation Workshop - Agenda 16:05 CET Keynote • Claudia Prettner, Project Adviser, European Health and Digital Executive Agency (HaDEA) 16:15 CET BRAINTEASER Results and Exploitation Challenges • Barbara Di Camillo, University of Padova, Information Engineering Department; BRAINTEASER Scientific Coordinator 16:25 CET Session 1: From lab to market - Unlocking the translation of research into brain innovation • Gianmaria Silvello, Professor, University of Padua; HEREDITARY Coordinator • Liesbet Geris, Professor, University of Liège, KU Leuven, VPHi; Research & Technology Working Group Leader, Avicenna Alliance • Elisabetta Vaudano, Principal Scientific Manager, Innovative Health Initiative (IHI) • Mats Sundgren, Senior Industry Scientific Director, European Institute for Innovation through Health Data (i~HD) 16:50 CET Session 2: From market to society - Enabling remote, value-based and patient-centred care • Natalia Allegretti, Senior Innovation Project Manager, ECHAlliance • Elisabeth Kasilingam, CEO, European Multiple Sclerosis Platform (EMSP) • Leon Brudy, Business Development Manager EMEA, Garmin Health • Umberto Manera, Assistant Professor, Department of Neuroscience - University of Turin 17:15 CET Session 3: BRAINTEASER innovation showcase: the clinical app • Vincenzo Carbone, Sr. Product Manager MedTech, InSilicoTrials • Carlos de Miguel Sánchez, Neurologist, General University Hospital Gregorio Marañón • Umberto Manera, Assistant Professor, Department of Neuroscience - University of Turin • Vebjørn Andersson, Research Coordinator, Oslo University Hospital; AI-Mind Project Coordinator 17:40 CET Session 4: BRAINTEASER exploitation roadmap - Key takeaways • Vincenzo Carbone, Senior R&I Project Manager, InSilicoTrials Technologies DELIVERABLE 8.7 28.07.2025, VERSION 1.0 GA 101137074 18 | 21 Gianmaria Silvello, HEREDITARY Coordinator, was invited to take part in Session 1 “From lab to market - Unlocking the translation of research into brain innovation”, bringing together key actors on the way from lab to the market to stress the power of collaboration to accelerate the translation of research into innovation. Public-private partnerships, which bring academia, industry, end-users as well as regulatory bodies together, were highlighted as key enablers. On that occasion, panellists also addressed main challenges to overcome to ultimately harness unstructured data in a meaningful way: insufficient funding, bureaucracy and healthcare unreadiness. BRAINTEASER (Bringing Artificial Intelligence home for a better care of amyotrophic lateral sclerosis and multiple sclerosis) is an EU-funded project seeking to exploit the value of big data (large clinical datasets, patient-generated data from wearables and air pollution data from sensors) to advance remote monitoring and clinical decision making in MS and ALS through an AI-based model. As the project was coming to an end, the democratisation of BRAINTEASER solutions and the exploitation of the project results represented a pressing issue, addressed from a patient, clinician and industry perspective. Throughout the duration of the event, speakers highlighted the codesign with patients as an opportunity of mutual learning resulting in more user-friendly solutions. The panel also addressed resource allocation, the hardship of making successful research marketable, the highly fragmented market and healthcare systems across the EU as major obstacles to the translation of research into practice. Brain Innovation Days proved an important learning and networking opportunity: HEREDITARY Coordinator notably had a chance to exchange with HaDEA representatives on the importance of liaison activities and clustering for a greater impact. 2.4.4 May 2025: Task Force 1.1 Alignment Meeting (virtual) On 15 May 2025, the Task Force 1 ''Integration of Multimodal Data, including Genomics'', led by the HEREDITARY project, held its first meeting. Seven project representatives from the HEREDITARY, COMFORTage, WISDOM, and ThrombUS+ projects attended. The meeting's objective was to discuss how each project is proceeding, highlighting the challenges encountered by each so far, to review the draft liaison plan, and to establish next steps. Discussions on the integration of multimodal health data confirmed that the projects within the task force are encountering similar hurdles – namely, establishing who can access the data, translating patient data into simplified resources, and harmonising heterogenous data from different sources and types. The group also raised the challenge of justifying the use of AI and navigating the ethical and legal regulations surrounding it. As a result of the discussions, the following collaboration opportunities were identified: • An online repository of deliverables on the HEREDITARY project website • A joint white paper describing the challenges and gaps in the field, and the solutions found by each project to overcome barriers To formally record these, EBC and HEREDITARY Coordinator agreed to extend a previous collaboration agreement to each member of the Task Force, detailing discussed collaboration opportunities. DELIVERABLE 8.7 28.07.2025, VERSION 1.0 GA 101137074 19 | 21 Ahead of the next meeting (set to take place in October 2025), it was agreed that projects will formalise the collaboration and start brainstorming on the content of the joint white paper. 2.4.5 May 2025: HEREDITARY, LETHE and BRAINTEASER Webinar “Federated Learning for Neurodegenerative Disease Research: A New Path to Risk Reduction and Better Care” As HEREDITARY and BRAINTEASER, LETHE also leverages multimodal health data integration in brain health (with a focus on preventing dementia in the early stages of development). HEREDITARY, LETHE and BRAINTEASER jointly organised, on 16 May 2025, the webinar “Federated Learning for Neurodegenerative Disease Research: A New Path to Risk Reduction and Better Care”. The webinar's aims were twofold: firstly, to educate the audience on federated learning, including its different types, and their benefits and challenges. Secondly, to showcase how HEREDITARY, LETHE and BRAINTEASER each use cutting-edge machine learning techniques to improve risk prediction, diagnosis, and patient care in neurodegenerative diseases. Running from 10:30 to 11:30 CET, the webinar was structured according to Table 4. Table 4 Agenda of the HEREDITARY, LETHE and BRAINTEASER Webinar “Federated Learning for Neurodegenerative Disease Research: A New Path to Risk Reduction and Better Care” – featuring Umberto Manera, HEREDITARY & BRAINTEASER Clinical Partner Federated Learning for Neurodegenerative Disease Research: A New Path to Risk Reduction and Better Care - Agenda 10:30-10:35 CET Welcome and Introduction • Natalia Allegretti, Senior Innovation Projects Manager, ECHAlliance 10:35-10:50 CET Introduction to Federated Learning and the Lethe Example • Hannes Hilberger, Researcher, FH JOANNEUM 10:50-11:05 CET Bridging Projects: How Federated Learning in HEREDITARY project can advance Brainteaser AI models • Umberto Manera, Assistant Professor, University of Turin 11:05-11:30 CET Questions from the audience On that occasion, Umberto Manera represented both HEREDITARY and BRAINTEASER as Clinical Partner. After providing a detailed explanation of HEREDITARY's aims, focus areas (multimodality, data integration, multilingualism, privacy and security) and methods, with a focus on the project's five interconnected layers and five use cases, Umberto Manera highlighted the potential benefits of HEREDITARY-BRAINTEASER cooperation. More specifically, Umberto Manera stressed how HEREDITARY's federated learning techniques could advance BRAINTEASER's artificial intelligence models and how such a collaboration could help building sustainable frameworks for data governance and improving international positioning. DELIVERABLE 8.7 28.07.2025, VERSION 1.0 GA 101137074 20 | 21 2.4.6 June 2025: Brain Talks Podcast “HEREDITARY project: trustworthy AI in advancing brain research” The BIDays-produced Brain Talks is a podcast series featuring key opinion leaders and stakeholders from the ever-growing brain ecosystem, discussing the latest breakthroughs, ongoing research and other exciting topics related to brain innovation. In this context, a HEREDITARY podcast episode was released on 27 June 2025. The episode is titled ''HEREDITARY Project: Trustworthy AI in Advancing Brain Research'' and introduces listeners to the HEREDITARY project while offering new insights into the project addresses topics including artificial intelligence (AI) and advanced analytics, multimodal health data, and data privacy and security. The 20-minute episode was professionally moderated by Sam Pauly and featured two guests: Elisabetta Biasin, Researcher at the KU Leuven Centre for IT & Law and a HEREDITARY Partner, and Helena Ledmyr, Director of Development and Communications at the International Neuroinformatics Coordinating Facility. Starting with an introduction to the project, the discussion later blended the project's methods and commitment to ensuring public trust and data privacy with an overall discussion on how to use AI and big data in a conscious, transparent, and safe way to advance health-driven research and innovation in Europe. Throughout the episode, HEREDITARY and its methods were therefore expanded to address AI-driven questions on a broader scale. DELIVERABLE 8.7 28.07.2025, VERSION 1.0 GA 101137074 21 | 21 3 Conclusion Since the beginning of the project, EBC has liaised with projects like HEREDITARY in nature and objectives with the aim to identify opportunities for cooperation, streamline efforts and overcome, in a collaborative approach, barriers to the implementation of research findings in real-world settings. The activities designed so far meet the needs identified by the cluster and are regularly reviewed to maximise their impact. To increase the visibility of this research field and the activities undertaken with related projects, HEREDITARY and the growing number of signatories of its collaboration agreement have committed to cross-link project websites. In this regard, a HEREDITARY website section dedicated to cluster members and activities is in the pipeline. HEREDITARY podcast episode represents a first attempt to establish, in the framework of liaison activities, links with relevant policy files – namely, the General Data Protection Regulation, the European Health Data Space and the EU Artificial Intelligence Act. Although many of the cluster projects are in their infancy, there is consensus on the need to bridge science and policy since early days: to initiate a dialogue with relevant policymakers on challenges and opportunities in the field, the cluster agreed on developing, in the next few months, a joint policy paper. To facilitate the exchange of ideas and experience, an in-person networking meeting bringing together representatives from both recent and experienced projects in the field is set to take place in October 2025.