HEREDITARY had its first Official Review, delivering positive results across all Work Packages

by | Sep 2, 2025 | Hereditary

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.

Hereditary celebrates its first year with 16 deliverables on time

by | Jan 13, 2025 | Hereditary

As we mark the first year of the Hereditary project, we are thrilled to reflect on the significant milestones we’ve achieved together. This year has been a testament to our collective strength, collaboration, and shared commitment to success. With over 100 individuals from 18 institutions across Europe and the US, the Hereditary project has laid a solid foundation for what is sure to be a fruitful and impactful journey ahead.

One of our most notable achievements this year has been the delivery of 16 high-quality deliverables, all on time, demonstrating our efficiency and dedication to project development. We are particularly proud of our December (12th month of the project) performance, where we successfully delivered 7 deliverables, ensuring we closed the year with impressive momentum. These deliverables are now available on our website, and we encourage anyone interested to consult those that are publicly accessible, on our zenodo profile.

16 deliverables in 12 months of existence

The deliverables produced during this first year of the project materialise the consortium’s progress in several of the 5 interconnected layers that make up the framework the project will develop to integrate multimodal health data.

  • Regarding the Federated Networking Infrastructure, we have defined the ethical guidelines for data collection and sharing for model training, as outlined in Deliverable 2.1 (D2.1) led by Università degli Studi di Torino (UNITO). Additionally, we set up the local computing and storage infrastructures in the medical centers, documented in D2.14, led by SURF BV (SURF).
  • In terms of the clinical use cases we focus on, and the data we work with, we have established guidelines for data harmonization and provided evidence-based criteria for the design of neurodegenerative use cases in D2.16, and the documentation for all the required approvals for the clinical studies in D2.19, both led by UNITO. We also conducted the initial evaluation of the integrated brain-gut linkage and behavioral phenotyping for feature extraction in federated learning, documented in D2.3 led by Radboudumc (RUMC).
  • In the Multimodal Semantic Integration Platform, we have developed the conceptual and linguistic systems that describe the medical terminology in D3.4 led by Universidade NOVA de Lisboa (UNL).
  • An important milestone in the project has been the development of the semantic ontology modeling concepts and processes for neurological diseases (Amyotrophic Lateral Sclerosis and Multiple Sclerosis), which includes a preliminary online version of the semantic ontology focusing on these diseases, as well as the design of federated execution methods, documented in D3.1 led by Università degli Studi di Padova (UNIPD). It synthesizes WP2, WP3, and WP4 contributions to provide a comprehensive framework for integrating clinical and genomic data through advanced ontology design and scalable query execution frameworks.
  • The Visual Analytics and Interaction layer has been enriched with the development of the initial conceptualization of the software libraries and documentation for visualization of sequences, networks, text, and high-dimensional data, as well as spatial, image, and simulation data, in the deliverables D5.1 and D5.3, led by Technische Universität Graz (TUGRAZ) and SURF.

In addition, during these first 12 months, Work Package 1 has built the architecture on which the management and execution of the project will be based, through the delivery of the Data Management Plan (D1.1, led by the European Molecular Biology Laboratory (EMBL)), the Quality Assurance and self-assessment Plan (D1.3, led by UNIPD) and the Risk Management Plan (D1.4, led by the European Brain Council (EBC)). In Work Package 6, guidelines for organising and implementing the Health Social Labs methodology were established in D6.1, elaborated by Observa Associazione (OBSERVA). In Work Package 7, KU Leuven developed the preliminary overview of the legal and ethical requirements applicable to the HEREDITARY project in D7.1. And, finally, FEUGA led through D8.1 and D8.4, the initial release of dissemination, communication, IP and exploitation plan, including the project webpage, Book of Style, and social media accounts creation.

What’s next for the HEREDITARY project?

Looking ahead to 2025, we are excited to build upon this motivation, continuing our collaborative efforts and addressing any uncertainties or questions openly to stay aligned. The groundwork for ongoing collaboration has been laid, and the future is bright. Big thanks to our partners and all the people involved in the project for their hard work and dedication. Now it’s time to focus on another year of success and growth in the Hereditary project!