by Admin | Jul 10, 2026 | Hereditary
The HEREDITARY project has reached another important milestone in its third year by delivering a new set of scientific and technical results to the European Commission. At Month 30, the consortium has completed six key deliverables that reinforce the project’s vision of enabling secure, privacy-preserving and multimodal research on neurodegenerative diseases across Europe.
These results represent significant progress across several work packages, ranging from clinical use cases and federated infrastructures to artificial intelligence, legal and ethical frameworks, and privacy-preserving analytics.
From data preparation to federated multimodal ALS research
One of the most relevant achievements is the publication of D2.17: Neurodegenerative Use Cases: Intermediate Results, led by the University of Torino (UNITO). This deliverable marks an important step towards federated multimodal research on neurodegenerative diseases. Using Amyotrophic Lateral Sclerosis (ALS) as its main demonstrator, the deliverable shows how HEREDITARY is moving from use-case design to operational data readiness, integrating FAIRified datasets, semantic interoperability through the HERO ontology, privacy-preserving genomic discovery, and biological insights into a common framework for federated research. Another important aspect of this work is the systematic inclusion of sex-disaggregated analyses, helping identify biological differences that may influence disease progression, diagnosis or treatment response.
The deliverable also outlines the project’s roadmap for ontology-enabled multimodal patient stratification, combining advanced machine learning and semantic technologies to support future federated analyses across institutions. In doing so, it validates Milestone 9 and establishes the scientific and technical foundations for the next phase of HEREDITARY’s neurodegenerative use cases.
Building trustworthy federated AI through privacy-preserving analytics
The newly released D3.8: Privacy-preserving Analytics: First Release, coordinated by Aalborg University (AAU), presents the first implementation of the privacy-preserving technologies that will be integrated into HEREDITARY’s federated analytics and machine learning platform.
The report describes how multiple complementary privacy technologies, including differential privacy, secure aggregation and homomorphic encryption, can be combined to protect sensitive information while still enabling collaborative data analysis across institutions. Beyond describing the underlying algorithms, the deliverable introduces mechanisms to continuously monitor privacy risks during federated computations and evaluates how different protection levels can be adapted depending on the analytical workflow.
These developments establish the privacy layer that will support future federated AI models and formally achieve Milestone MS10, dedicated to privacy-preserving methods within HEREDITARY.
Combining biomedical data for more accurate AI models
The publication of D4.5: Multimodal Learning Methods, led by Radboud University Medical Center (RUMC), presents a new set of computational tools and machine learning methods for multimodal biomedical analysis focused on gut health.
The deliverable also evaluates different strategies for combining histopathology, microbiome and clinical data. The results show that integrating histopathology with fecal microbiome data provides the strongest predictive performance, establishing an important methodological baseline for future multimodal analyses within HEREDITARY. The deliverable also foresees the incremental publication of trained models through Grand Challenge platforms and as open-source software, supporting transparency, reproducibility and collaboration within the scientific community.
Strengthening ethical and legal foundations for European health data sharing
The consortium has released D7.2: In-depth Legal and Ethical Study, coordinated by KU Leuven, which expands the initial legal and ethical inventory developed earlier in the project.
The report analyses the regulatory challenges associated with federated research infrastructures, including GDPR compliance, secondary use of health data, governance responsibilities and cross-organisational collaboration. Rather than providing only theoretical guidance, the study evaluates these issues across HEREDITARY’s clinical use cases, offering practical recommendations for implementing secure “tool-over-data” approaches where algorithms travel to the data instead of transferring sensitive datasets.
Complementing the legal study, the consortium has also published the updated D2.2: Ethical Guidelines, Data Collection and Sharing. The document revises the project’s ethical guidance based on the experience gained during the first half of the project and reflects the evolving requirements for federated model training and multicentre collaboration. It updates recommendations for data sharing, incorporates revised procedures for prospective data collection where necessary and strengthens the links between ethical governance activities and the project’s wider regulatory framework.
Federated infrastructure Implementation
In parallel, the consortium has successfully submitted D2.12: Federated Infrastructure Implementation, marking another important technical achievement for the project. This deliverable advances the implementation of HEREDITARY’s federated infrastructure, which enables secure distributed analysis across participating institutions without centralising sensitive data. Although the deliverable has been officially delivered to the European Commission, it is not yet publicly available because parts of its content are currently under scientific review and publication.
Looking ahead
These new deliverables illustrate how HEREDITARY continues to transform its scientific vision into practical technologies and validated methodologies.
By simultaneously advancing federated infrastructures, privacy-preserving AI, multimodal machine learning, integrated clinical research and trustworthy governance frameworks, the project is steadily building an ecosystem where researchers can collaborate across Europe while keeping sensitive health data protected. As the project moves towards its next phase, these achievements provide a solid foundation for the forthcoming demonstrations, validation activities and clinical applications that will further accelerate innovation in neurodegenerative disease research.
by Admin | Jun 9, 2026 | Hereditary
One of the biggest challenges in HEREDITARY is not only to collect and secure integrate data, but also to make sense of it.
Researchers, clinicians, policymakers and citizens are increasingly confronted with vast amounts of information coming from medical images, genetic data, microbiome profiles, electronic health records, simulations and many other sources. While these datasets hold enormous potential to advance our understanding of health and disease, their complexity can make them difficult to interpret and use effectively.
This is where HEREDITARY’s Work Package 5 (WP5), coordinated by TU Graz, comes in. Through the development of innovative visual analytics methods and interactive exploration tools, WP5 helps transform complex multimodal data into understandable insights that can support research, prevention and decision-making across the healthcare ecosystem.
Today, we are excited to showcase a big result coming from this work: the launch of the HEREDITARY Demos & Visualisation Components Portal, publicly available at: https://demos.hereditary-project.eu/.
From research prototypes to publicly accessible demonstrators
Over the last two years, WP5 has progressively transformed visualisation concepts into operational demonstrators and interactive applications.
The developments reported in a series of deliverables (D5.1, D5.2, D5.3 & D5.4) include visualisation components for:
- High-dimensional biomedical data.
- Knowledge graphs and semantic resources.
- Brain imaging and spatial data.
- Time-series and biosignal analysis.
- Simulation and modelling outputs.
- Natural language-assisted visual analytics.
A key principle throughout this work has been openness and reusability. To make these developments accessible to a broader audience, TU Graz has established a dedicated demonstrator infrastructure that hosts and deploys visual analytics applications developed within HEREDITARY. The new Demos & Visualisation Components Portal now brings many of these innovations together in a single public entry point.
Created through close collaboration between TU Graz and partners across the consortium, including experts in medical research, federated infrastructures, machine learning, data management and semantic technologies, the portal demonstrates how advanced visual analytics can support the exploration of multimodal health data. The portal currently includes 15 demonstrators, videos (in some cases) and code (available in most of them), from semantic exploration and cohort analysis to brain imaging, machine learning interpretation and simulation-based research.
Exploring the gut-brain connection through visual analytics
Among the flagship developments showcased in the portal is the Gut Brain Explorer, an advanced visual analytics application designed to explore relationships between gut microbiota and brain activity.
The tool combines multiple linked visualisations to allow researchers to investigate outputs generated through Linked Independent Component Analysis (LICA), integrating microbiome information with functional brain imaging data. Users can interactively explore microbiota distributions, modality contributions and brain activity patterns through coordinated views.
The component has already demonstrated its scientific value during project evaluations, supporting researchers in identifying biologically relevant gut-brain associations.
Making complex biomedical data easier to explore
Several other demonstrators address complementary challenges in data exploration and interpretation.
Clusters in Focus helps researchers identify and compare meaningful patient subgroups within high-dimensional biomedical datasets, supporting tasks such as biomarker discovery and phenotyping.
Neurodegen-Vis combines interactive visual analytics with LLM-powered assistance to support the exploration of healthcare datasets. The tool enables users to investigate correlations and dependencies in medical data while receiving guidance through natural language interaction. Privacy-preserving mechanisms are integrated to protect sensitive information.
OnSET (Ontology and Semantic Exploration Toolkit) helps users navigate complex knowledge graphs and ontologies through natural language querying and visual graph exploration, making semantic resources more accessible to non-experts.
Building trust through transparency and interaction
One of HEREDITARY’s core ambitions is to ensure that advanced AI and data-driven methods remain understandable and trustworthy for the people who use them. Visualisation plays a crucial role in achieving this goal.
By allowing users to interact directly with data, inspect results, understand relationships and explore evidence behind conclusions, visual analytics can help make complex technologies more transparent and interpretable. This is particularly important in healthcare, where trust, explainability and human oversight remain essential.
As HEREDITARY progresses, new demonstrators and functionalities will continue to be added, further expanding the ecosystem of tools available for exploring multimodal biomedical data, semantic resources and AI-driven analyses.
🔗 Explore all the demonstrators and get in touch with the team responsible for each one: https://demos.hereditary-project.eu/
by Admin | Jun 5, 2026 | Citizen Science and Public Engagement
On 30 June 2026 (14:00 to 17:00 CEST), the HEREDITARY project will host the HEREDITARY Advocacy Workshop, an online event led by the European Brain Council (EBC) that will bring together researchers, patient advocates, policymakers and civil society representatives from across Europe to explore the connection between scientific research and European policymaking.
The workshop will provide a unique opportunity for participants working in areas related to brain diseases, neurodegenerative disorders, the gut-brain axis, artificial intelligence, and health data governance to better understand how scientific expertise can inform policy discussions and decision-making processes at the European level.
Designed as an interactive and engaging event, the program combines expert insights, multi-stakeholder dialogue and hands-on activities that encourage participants to explore the science–policy interface from different perspectives.
Bridging the Gap: Neuroscience Research and EU Policy
The first session will introduce participants to the European policymaking landscape and explore how scientific evidence contributes to legislative and regulatory developments. Through concrete examples and case studies, participants will gain insights into key EU policies relevant to brain and hereditary disease research. The session will also address emerging neuroethical challenges at the intersection of genetics, neuroscience and public policy.
From Research Findings to Policy: Panel Discussion and Q&A
An interactive panel discussion will bring together perspectives from policy, research and civil society to discuss how scientific findings can be translated into policy-relevant dialogue. Speakers will explore effective science communication, engagement with EU institutions and opportunities for researchers interested in contributing to policymaking throughout their careers. A live Q&A session will allow participants to engage directly with the panelists.
The Policy Table: Stakeholder Simulation Exercise
In the final session, participants will take part in a policy simulation exercise inspired by real-world challenges related to hereditary brain diseases, neurodegenerative disorders, gut-brain health, AI diagnostics and other HEREDITARY research themes. By assuming the roles of different stakeholders, including researchers, patient advocates, policymakers, legal experts and industry representatives, participants will experience firsthand the complexities of policy negotiations and decision-making processes.
How to participate
The HEREDITARY Advocacy Workshop offers an excellent opportunity to connect with stakeholders across sectors, gain a deeper understanding of the European policy landscape and explore how research can contribute to societal impact beyond the laboratory.
Participation is free of charge, and researchers, policymakers, patient advocates and civil society representatives are particularly encouraged to take part.
REGISTER NOW
Check out the PRELIMINARY AGENDA
by Admin | May 21, 2026 | Citizen Science and Public Engagement, Hereditary
Observa Science in Society, one of the partners in our consortium, has released a special edition of Observa Magazine entirely dedicated to the themes and research activities of the HEREDITARY project.
The publication explores the impact of digital technologies on healthcare and society, focusing on topics such as citizen science, digital health, AI, and the use of health data in research. The magazine also examines how healthcare systems are increasingly moving towards prevention, personalized medicine, and continuous health monitoring through digital tools and platforms.
One of the central topics addressed in the publication is the importance of citizen science and public participation in scientific research. The issue presents findings from studies on public opinion, showing that many citizens are willing to contribute to research activities by making their health and personal data available, particularly when data sharing can support medical progress and improve healthcare outcomes.
At the same time, the magazine addresses important ethical and social challenges linked to digital health, including privacy protection, transparency, data governance, and the growing role of large technology companies in the management of health-related information.
The publication is available in both Italian and English. You can access HERE.
by Admin | May 5, 2026 | Citizen Science and Public Engagement
This latest edition of the full interview with Dolores Ayala, in which she previously discussed her personal experience of living with Progressive Bulbar Palsy (PBP), and how technology and care affect disease management, highlight the importance of patient voices in research, care and innovation. Conducted by OBSERVA under Citizen Participation activities in HEREDITARY project, Dolores shares her reflections on communication between patients, healthcare professionals and researchers, as well as the ethical challenges that should be addressed to ensure dignity, understanding and meaningful participation.
How do you rate the communication between healthcare professionals, researchers, and patients? What could be improved?
Generally, the hierarchy is top-down, with healthcare professionals at the top, followed by researchers, and in the worst cases, a dispute between the two for first place. Thirdly, there’s the disease, the treatment, the technique, and so on. And, sadly, the patient is relegated to last place, often objectified, so much so that they aren’t even allowed to express their opinion. In some hospitals, the “specialists” never address the patient, only the accompanying person, creating an experience of violence by rendering the suffering person invisible.
In your opinion, how are neurodegenerative diseases communicated to the public today, and what aspects are oversimplified or omitted?
Continuing with the issue of the hierarchical structure established by these systems, some neurologists, believing themselves to belong to a very high, privileged class, seem to disregard the patient’s capacity to understand the situation and instead deliver the diagnosis to their companion: “They have ALS, it’s a very serious disease. There’s nothing that can be done. They only have a few years to live.” Faced with such a statement, one wonders: What is ALS? What will happen to me? What can I expect? How will I be treated? What should I do to take care of myself? Who should I turn to? And so on. But they don’t even allow for these questions.
With a little more detail, the diagnosis could be given like this: “You have ALS, a degenerative motor neuron disease, which means that it will paralyze your body’s muscles. And you will need special care and attention throughout the process.” It would be ideal if everyone who has a degenerative disease could find specialists who see the patient as one of their own and who are empathetic, approachable, and compassionate. These specialists should ensure they offer the patient a sense of closeness and look them in the eye with tenderness before delivering the diagnosis, speaking slowly and gently, making sure that both the patient and their family understand every word spoken, and allowing them the opportunity to ask for clarification or ask their own questions until they grasp the magnitude of the disease and begin to see the path ahead.
It is important to reassure patients that they are not alone and that they will be helped to integrate into a team of professionals with different specialties, who will support and guide them through the various stages of the disease. Furthermore, it is essential to be prepared to answer the same questions as many times as necessary until the person with a neurodegenerative disease, their family, and caregivers have fully understood them and each person knows their role. This can be done with the collaboration of some members of the care and support team established to assist the person in question.
What do you consider to be the main ethical challenges in research on neurodegenerative diseases?
Here are the ones that come to mind:
- Ensure respect for the dignity, uniqueness, and identity of the person with a neurodegenerative disease.
- Treat them with humanity, dignity, and attentiveness (address the person directly and strive to understand them; speaking only with family members is insufficient). Never ignore the person or speak of them as if they weren’t present.
- Offer all relevant information in an understandable way.
- Give the person the opportunity to express their doubts, fears, and experiences, and value them.
- Request the person’s permission before giving explanations to residents, and never lose sight of the fact that the person must be at the center of attention, care, and research processes. Beyond research protocols and treatments, the quality of treatment and care that must be ensured for each person should never be overlooked.
- Do not place undue emphasis on the potential benefits of the protocols, but neither should you paint apocalyptic scenarios that kill hope and destroy the person’s mental strength.
- Assume the ethical duty to conduct continuous evaluations throughout the entire process and to report on them, the processes, the progress, and the results at all stages of the research protocols.
- Provide the person with psycho-emotional support before, during, and after the research process.
- Address their doubts, fears, and decisions, and consider the supporting evidence, respecting and prioritizing them, even if they decide not to continue participating in the research.
- Avoid any action or attitude that belittles or further harms the person with ED.
- Their rights to know the diagnosis and to make decisions about the treatments and interventions they will undergo must be respected.
- The way in which the diagnosis is communicated can influence the psychological and emotional state of the affected person and, therefore, how they face the future.
- It is recommended to refer to the disease by its name (e.g., Amyotrophic Lateral Sclerosis, Degenerative Disease X), explaining its degenerative nature.
- It is advisable to emphasize the positive aspects and the fact that no two people are affected in the same way with the same symptoms.
- When presenting therapeutic options, information should be clearly provided regarding their actual effectiveness, possible side effects, alternative therapies, and current research.
- Furthermore, the person with a neurodegenerative disease should be informed about the implications of the treatment, including whether its effectiveness has been demonstrated and its cost.
- The following objectives should be met when communicating the diagnosis:
- Do not deny the patient any information they request.
- Do not force information on them that they do not wish to hear.
- Consider the patient’s reactions to the information provided.
- Once the diagnosis has been communicated, it is recommended to seek a second opinion to confirm or rule it out.
- Doctors should refer the person with a neurodegenerative disease to the appropriate specialists for their diagnosed condition immediately. (It took me two years to find a specialist in neurodegenerative diseases (and therefore, in PBP), while for months I was seen in the next cubicle at the hospital by a specialist in muscular diseases.)
- Caution is needed when diagnosing “rare” diseases, and attention must be paid to recognizing potential limitations and diagnostic errors. I was originally told I had ALS, which seemed like a death sentence, but now the evidence points to PBP, which has a better life expectancy. The emotional impact can indeed accelerate a patient’s decline.
Looking to the future, what changes do you consider priorities —at a technological, ethical or social level— to improve the quality of life of patients?
In all three areas – ethical, technological, and social – it is fundamental to recognize and prioritize the person with a degenerative disease because, in addition to everything mentioned previously, they are essentially relational human beings. Which means that communication and interaction with others are as essential to their well-being as nourishment. They need to be able to see their neurologist and other specialists as allies: approachable, kind, and compassionate individuals who can support, care for, and explain everything about their condition. These specialists should use their empathy, kindness, and knowledge in a simple and humane way, fostering trust and the certainty that they are genuinely interested in the person, to allow for consultations, tests, and the application of technology to become moments of dialogue and closeness, like a family gathering. In this way, the person with a degenerative disease will feel accompanied and supported every step of the way throughout the course of their illness, without fear and with confidence in the entire team working with them. This helps the degenerative disease to take a back seat, and the person feels relaxed and more motivated to do their part without delay or excuses.
It is essential that healthcare institutions receive and welcome people with degenerative diseases with the utmost respect and instill in them the understanding that they are there to help them in every way possible so they can have the best quality of life. Furthermore, these institutions must commit to securing economic, educational, therapeutic, psychological, transportation, and social assistance support from civil authorities so that these individuals can live a dignified, peaceful, and well-supported life. A life that can truly be called high-quality.
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