On 28 August 2025 the HEREDITARY project successfully completed its first Official Review Meeting with the Project Officer and external reviewers. During the session, the consortium showcased the main achievements of each Work Package (WP), highlighting the progress made during the first 18 months of the Project.
Reviewers commended the consortium for its strong coordination, the high quality of deliverables, the collaboration with other EU projects, and the timely progress across technical, clinical, societal and legal dimensions. The meeting was well organised and full of valuable insights that will improve the implementation of the project in its next phases.
Building a secure federated health-data network
One of the most significant milestones has been the deployment of a federated health-data infrastructure across four hospitals. This network enables secure, privacy-preserving analysis without moving sensitive data, a critical step for GDPR compliance and EHDS ambitions. The first horizontal and vertical learning experiments on ALS data were completed. The five multicentre clinical use cases that will be used to provide data and test the project’s developments have been defined: ALS prognosis, multi-disease diagnosis, Parkinson’s eye imaging, gut-brain phenotyping in healthy cohorts and gut-brain linkage in disease.
Advancing Multimodal Semantic Integration and AI Advanced Analytics
The project delivered an open HERO Ontology, integrating clinical, genomic, and imaging data plus a live SPARQL explorer. Together with a polystore prototype, this provides a unified semantic view across diverse health data sources: compiling 9000 candidate terms and 1700 concepts for a multilingual medical terminology hub. PrivEval was also delivered: a hands-on tool that assesses privacy leakage in synthetic datasets.
New AI tools such as PubMiner, an LLM pipeline that converts PubMed articles into knowledge-graph triples, are already contributiong to biomarker discovery in ALS. At the same time, multimodal self-supervised models are already outperforming single-modality baselines on internal EEG, MRI and omics benchmark.
Innovative visualisation and citizen engagement
We require advanced visualisation techniques to interact with large volumes of data. That is why the consortium launched award-winning visualisation tools like Droplets and interactive platforms such as OnSET and ALviS, offering new ways to explore complex health data.
At the same time, Health Social Labs (HSLs) have been activated across Europe to engage citizens, patients, and clinicians in co-design activities, ensuring that HEREDITARY’s advances are socially robust and aligned with real-world needs.
Ethics, law, and policy alignment
A comprehensive inventory of GDPR, Data Governance Act, AI Act, and cybersecurity requirements has been completed, embedding privacy and ethics by design. Also, a FAIR-compliant Data Management Plan an ethics playbook aligned with those regulations were delivered. Reviewers highlighted this as a unique strength of HEREDITARY, demonstrating how technical innovation is matched with legal and ethical foresight.
All these advances can be consulted and expanded upon through the 44 scientific publications available on Zenodo, 23 deliverables and the new Open Hub web section, which ensure widespread dissemination of the project.
Overall, the first 18 months of HEREDITARY have laid a strong foundation for achieving its objectives. With its federated platform, semantic integration tools, advanced AI, and legal analysis, the project is already delivering results beyond the state of the art, bringing Europe closer to a trusted, cross-border health data ecosystem that enables early and more effective diagnosis and treatment strategies for ALS, Parkinson’s and gut–brain disorders.
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