by Admin | Jun 24, 2025 | Hereditary
The HEREDITARY (HetERogeneous sEmantic Data integratIon for the guT-brAin inteRplaY) project has released a new animated video to introduce its innovative approach to improving healthcare through the integration of heterogeneous health data. The video includes a summary of the project’s main objectives, highlighting the way HEREDITARY is tackling the complex challenge of linking multimodal health data while preserving data privacy.
At the heart of the project is the five-layered Federated Networking Infrastructure, which ensures secure and collaborative machine learning across different locations without transferring sensitive raw data. This innovative approach enables collaborative research and analysis on neurodegenerative and gut-brain-related disorders, supporting the development of more accurate diagnostics and personalized treatments.
Watch the video to discover how HEREDITARY is changing the way we approach healthcare.
by Admin | Jun 20, 2025 | Hereditary
June 21 marks World ALS Awareness Day, a time to raise global awareness of Amyotrophic Lateral Sclerosis (ALS), a neurodegenerative disease that continues to impact thousands of individuals and families worldwide. The date symbolizes the solstice, a turning point in the year, to remind the urgent need for breakthroughs in research and support systems for patients and caregivers.
ALS is a progressive neuromuscular condition that affects nerve cells in the brain and spinal cord. As motor neurons deteriorate, patients begin to lose motor autonomy, oral communication, swallowing or breathing, leading to multilevel paralysis and death, often within 2 to 5 years of diagnosis, although there is still a big variation when it comes to the life expectancy.
Globally, it is estimated that over 450.000 people are living with ALS, about 6 per 100.000, and approximately 120,000 new cases are diagnosed every year. This means that every day there are 328 new cases known. Though the disease can affect anyone, it most commonly appears between the ages of 40 and 70. In Europe alone, ALS affects roughly 50.000 individuals of middle age and kills about 10.000 people. Worldwide, 120.000 patients die from ALS every year.
The causes are yet unknown, due to the multimodal nature of factors involved (genetic, environmental and biological factors are believed to interact in complex ways), as well as an effective treatment or prevention method.
HEREDITARY’s contribution to ALS research
HEREDITARY contributes to the broader effort of understanding and treating diseases like ALS by developing a federated platform that facilitates secure, ethical and interoperable analysis of sensitive health data across multiple clinical and research centers.
Use case 1 specifically focuses on ALS, with the aim of enabling researchers to analyse data patterns more effectively and develop insights into disease progression, variability, and potential biomarkers. Use case 2 also applies to ALS, focusing on improving diagnosis and treatment response by developing advanced ontologies that connect genetic variant functions with clinical phenotypes to identify patient subgroups and uncover patterns. The goal is to support better disease management and improved quality of life for people living with ALS.
By integrating and harmonising data from different institutions, without moving it or compromising privacy, HEREDITARY’s infrastructure is designed to support studies in ALS and other neurological diseases, opening the door to new discoveries and future interventions.
EUpALS: the voice of ALS patient organisations in Europe is one of the HEREDITARY partners
On Monday, June 16, EUpALS, HEREDITARY’s most active and experienced partners in the ALS field, organized its Annual General Meeting, satellite to ENCALS 2025 in Turin, bringing together a strong network of Profesionals and People with ALS from across Europe.
During the meeting, EUpALS shared updates on its ongoing activities and governance, as well as its active involvement in EU Horizon projects, including, not only HEREDITARY, but also REAL4REG Project. The presentations, attended by 30 ALS associations from 22 European countries and 17 industry partners, highlighted the relevance of making progress in ALS research, where HEREDITARY stands out with the advancements in Use Case 1 for neurodegenerative diseases, phenotyping and prognosis evaluation.
by Admin | Jun 9, 2025 | Hereditary
As part of the HEREDITARY project’s commitment to fostering cutting-edge research, a four-month (March-June 2025) Hackathon took place to tackle real-world challenges in genomics and transcriptomics through machine learning.
Organized by HES-SO as part of Work Package 4 (WP4), the Hackathon brings together a dynamic team of six PhD students from the University of Padova. Over these four months of a productive collaboration, they have been working closely with the HEREDITARY researchers Manfredo Atzori and Henning Müller, exploring different domains of machine learning in the field of genomics and transcriptomics.
This initiative fosters learning and innovation, while reinforcing collaborative ties between HEREDITARY partners. The success of this Hackathon is paving the way for future exchanges between partners that will explore new topics.
Stay tuned for more updates as HEREDITARY continues to push the boundaries of biomedical data analysis.
by Admin | Jun 3, 2025 | Hereditary
On Wednesday, May 28th, 2025, the HEREDITARY consortium held its online Plenary Meeting, bringing together all project partners to review and present the progress made during the first 18 months of the project.
The representatives of each work package presented the updates, key achievements, and ongoing activities, providing a comprehensive overview of the project’s status. All 18 partners attended the presentations and provided feedback and ideas for each of the presentations. These discussions are essential to ensure that the project moves forward in a unified way. This meeting also served as a rehearsal for the upcoming first official review with the European Commission, scheduled for August 28th, 2025.
The main focus of the meeting consisted on the presentation of each Work Package. The WP leaders highlighted the project’s achievements during the first 18 months, describing the process and decisions undertaken to reach the current stage of the project.
Beyond that, one of the most engaging parts of the session was a series of live demonstrations showcasing technical progress and early results across different areas of the project. The Università degli Studi di Padova, Ontotext and TU Graz presented the demos highlighting the applications developed within the framework of the project on Data, AI, Federated Learning, Image Visualization, and more.
In addition, the meeting included detailed updates on all five Use Cases, covering status, challenges, and the next steps. Each Use Case provided insights into how their domain-specific work is progressing and contributing to the broader objectives of HEREDITARY.
This meeting contributed to improving presentations, aligning key messages and reinforcing the collaboration between the consortium in the lead up to the August Official Review.
by Admin | Jun 3, 2025 | DATA Knowledge
In today’s data-driven world, one of the biggest challenges we face is how to protect individual privacy without slowing down scientific and technological progress. How can we responsibly analyse, develop, and innovate while handling sensitive information? One possible answer could be synthetic data.
What is Synthetic Data?
Synthetic data is artificially created information that imitates real personal data without revealing any personal details. It is artificially generated using AI algorithms and models, rather than being collected from real-world events or human activity. As it serves as a substitute for real data, it allows researchers to work with realistic datasets while safeguarding privacy, for example to train machine learning models to predict disease development.
How is Synthetic Data generated?
Synthetic data is not just made up, it is generated using advanced algorithms that learn generative models from real data. There are several techniques and approaches to generate synthetic data, depending on the use case and the type of data needed. Some of the most common methods are:
- Statistical distribution: One of the earliest approaches involves analysing real data to determine its statistical properties and estimate the relationships between variables. Then, synthetic samples are generated to match these properties and follow the same logic and distributions.
- Model-based simulations: In some cases, especially in behavioural or epidemiological studies, researchers build simulations based on known rules, such as how a disease spreads in a population. These simulations create synthetic datasets that resemble real-world dynamics.
- Deep learning Methods: Today, deep learning techniques, especially Generative Adversarial Networks (GANs) and Variational Autoencoders (VAEs), are at the forefront of synthetic data generation. These models are trained on real datasets and then generate new, realistic examples that are statistically similar to the originals but contain no trace of real individuals. This is very useful to create complex and multimodal synthetic data, including images, videos or text, which could generate accurate genetic profiles or clinical trajectories in a research project such as HEREDITARY.
The Massachusetts Case
The story of synthetic data begins with one of the most well-known privacy failures: the Massachusetts Group Insurance Commission case. In the 1990s, a privacy breach in Massachusetts showed that simply anonymizing health data wasn’t enough.
The Group Insurance Commission, an agency of the state of Massachusetts, decided to release health records of its employees to the public, believing that simply removing obvious identifiers like names and addresses would be enough to protect individual privacy. Their goal was to enable researchers to analyze health trends without compromising personal information.
Is removing names really enough to keep data anonymous? Using only publicly available information, such as birth dates, zip codes, and gender, researchers managed to re-identify the medical records of the Massachusetts governor by linking the “anonymized” health data with voter registration lists. This revealed a shocking truth: most people are uniquely identifiable by just a few data points like date of birth and zip code, meaning that the so-called anonymized data was far from anonymous — it was vulnerable to re-identification attacks.
Based on advancements in data privacy research in 00s and 10s, synthetic data emerged as a promising solution.
Benefits of Synthetic Data in Health Research
🔹 Protects patient privacy and avoids data linkage attacks.
🔹 Synthetic data can be produced in any quantity, tailored to specific needs, and is often much cheaper and faster to generate than collecting real data.
🔹 It can be engineered to correct imbalances or biases present in real datasets, improving the fairness and accuracy of AI models.
HEREDITARY most recent contribution
These ideas took center stage at a workshop held by Daniele Dell’Aglio and Frederik Marinus Trudslev from Aalborg Universitet on Thursday, May 22nd, as part of the HEREDITARY project. HEREDITARY consortium explored there how synthetic data is created and why it plays a key role in shaping a privacy-aware, ethical future for data science.
by Admin | May 7, 2025 | Events
On Friday, 16th May, HEREDITARY will participate in a joint webinar alongside two other leading EU-funded initiatives — LETHE and BRAINTEASER — to explore how federated learning is shaping the future of neurodegenerative disease research.
The online event, titled “Federated Learning for Neurodegenerative Disease Research: A New Path to Risk Reduction and Better Care“, will take place from 10:30 to 11:30 CEST. It offers a unique opportunity to learn how cutting-edge machine learning approaches are being applied across collaborative European research efforts, enabling a secure, privacy-preserving data collaboration to improve risk prediction, diagnosis, and patient care in neurodegenerative diseases.
It will begin providing the audience with an introduction to federated learning and then dive into examples of how federated learning is being used in the three projects. There will be a chance at the end of the webinar for the audience to participate and ask our panellists questions.
Hereditary’s participation in the webinar
HEREDITARY will take center stage through a presentation by Umberto Manera, from Università degli Studi di Torino, a researcher partner for both HEREDITARY and BRAINTEASER, who will discuss how federated learning techniques in HEREDITARY can advance AI model developed by BRAINTEASER Project in clinical settings. Check the agenda, speakers and learn more about the projects here.
Join us to discover how federated learning is opening new frontiers in health research and paving the way for more personalized and effective care across Europe. Sign up here.
by Admin | May 5, 2025 | Hereditary
The HEREDITARY project is pleased to announce that it has entered into a collaboration agreement with DataGEMS (“Data Discovery Platform with Generalized Exploratory, Management, and Search Capabilities”), a project funded by the European Union’s Horizon Europe Research and Innovation Programme. They also focus on the world of data, aiming to offer a next-generation dataset discovery and management ecosystem that will provide algorithms to make datasets more accessible: discoverable, combinable and explorable.
DataGEMS develops quick and easy access to data with natural language and machine learning technology to discover, link and analyse datasets of different data modalities (such as tabular data, text documents, knowledge graphs, and images). The main goal is to gain new insights into vast amounts of complex and heterogeneous data sets by providing intuitive tools, as HEREDITARY intends to do with large volumes of multi-modal health data. DataGEMS also promotes data FAIRness in key areas such as education, meteorology and linguistics.
This agreement, effective from May 5, 2025, until December 31, 2027, establishes a framework for voluntary cooperation between the two projects. It aims to harness their complementary technical strengths to advance data discovery and integration in health research.
From a technical angle, the collaboration between HEREDITARY and DataGEMS will focus on improving data discovery methods, co-developing advanced data profiling methods, facilitating researcher exchanges, expected joint publications, and promoting the development of use cases based on open data, all while ensuring compliance with GDPR. This collaboration reflects the shared commitment of both projects to leverage their strengths and push the boundaries of data discovery in health research.
by Admin | Apr 11, 2025 | Hereditary
Every year on 11 April, World Parkinson’s Day raises awareness about this chronic and progressive neurodegenerative disorder that affects millions of people worldwide. This day serves to highlight the importance of early diagnosis, continued scientific research, and the need for comprehensive care strategies that support both patients and caregivers to finally improve the quality of life of those affected.
Parkinson’s disease (PD) is currently one of the fastest-growing neurological disorders in the world. In Europe alone, more than 1.2 million people are living with the condition—a figure that is expected to double by 2030. Globally, the number of people affected is estimated to reach 11.8 million.
PD is a complex and progressive neurodegenerative disorder that affects movement, cognitive function, and overall quality of life. Its symptoms and progression vary widely, making each case unique. Although its exact cause remains unknown, current research points to a combination of genetic and environmental factors.
Despite notable advances in treatment, there is still no cure. Existing therapies focus primarily on managing symptoms rather than slowing the disease’s progression, highlighting the urgency of continued research and innovation in both medical and supportive care strategies.
HEREDITARY’S contribution
The need for early detection and personalised treatment has never been greater — and this is where the HEREDITARY project steps in.
Funded by the European Union’s Horizon Europe programme, HEREDITARY is unlocking the potential of health data spaces and AI-driven reasoning systems to advance the understanding, detection, and treatment of neurodegenerative diseases like Parkinson’s.
In Use Case 3, HEREDITARY integrates a wide range of multimodal data—including brain imaging, ophthalmic scans, clinical records, and more—to make progress in tackling this disease. The UCD is currently leading an innovative research through advanced AI techniques such as deep learning and unsupervised learning, aiming to identify early biomarkers of Parkinson’s, particularly those visible in the eye, and to uncover patterns that could help predict disease development and progression. This integrative approach not only supports earlier and more accurate diagnosis but also opens new doors to personalized treatment strategies.
HEREDITARY is part of a broader movement across Europe. Other impactful EU-funded projects include:
- The AIPD Project aims to create an international, interdisciplinary graduate school to train the next generation of medical data scientists with a strong translational focus.
- The BICEPS Project is working under the hypothesis that immune system dysfunction plays a role in Parkinson Disease and will utilise advances in systems biology and AI towards new diagnostics and therapies..
- The AI-PROGNOSIS Project aims to advance PD diagnosis and care through novel predictive models combined with digital biomarkers from everyday devices.
- The UNMASK Project is continuing the work of the SCENT project on a bio-based artificial nose system that can be employed for the diagnosis of neurodegenerative diseases such as Parkinson’s and Alzheimer’s diseases.
Parkinson’s affects people of all ages, genders, and backgrounds — and raising awareness is key to driving more research, better care pathways, and early diagnostic innovations that can improve quality of life for millions. As we commemorate World Parkinson’s Day, HEREDITARY stands with researchers, clinicians, patients, and caregivers across Europe to foster a future where technology empowers earlier diagnosis, personalised care, and better lives for those affected by Parkinson’s disease.
by Admin | Mar 14, 2025 | DATA Knowledge
On March 5, the Health Data Space (EHDS) has been Official Journal of the EU. This pioneering initiative aims to create a secure and efficient digital health-specific data environment, benefiting all EU citizens and healthcare professionals, researchers and policymakers.
It will make it easier to exchange and access health data at EU level. It promises to improve individuals’ access to and control over their personal electronic health data, while also enabling specific data to be reused for research and innovation purposes for the benefit of European patients. By fostering a more interconnected, patient-centred, and data-driven healthcare system, the EHDS will enhance efficiency, reduce administrative burdens, and support innovation and long-term sustainability of health services.
Trust is also fundamental to the EHDS. The framework builds on existing EU regulations, including the General Data Protection Regulation (GDPR), to provide a trustworthy setting ensuring data protection.
Primary use: citizens and individuals
The EHDS places citizens at the heart of healthcare by granting them better control over their personal health data. Key benefits include:
- Fast and Free Access: Individuals will be able to swiftly access their electronic health data, facilitating seamless sharing with healthcare professionals or family members in case of need across the EU.
- Enhanced Control: Citizens will have the ability to add personal health information, restrict access to specific parts of their records or to specific persons, view who accessed their data, and request corrections if errors are found.
- Security and Privacy: The EHDS requires robust security and privacy protections by default, to align with the EU’s high data protection standards.
Learn more about the primary use of the health data in the EHDS by clicking here.
Secondary use: research and innovation
At the same time, researchers, public health authorities, and policymakers will be able to leverage health data in a secure and privacy-preserving way to accelerate the development of new treatments, improve disease prevention, and strengthen Europe’s crisis preparedness.
For research projects like HEREDITARY, the EHDS offers unprecedented opportunities:
- Access to High-Quality Data: Researchers will be able to access to large-scale health data, in anonymised or pseudonymised form, crucial for developing life-saving treatments and personalized medicines.
- Structured data discovery: A clear and structured system allows researchers to discover available data, understand its location, and assess its quality, making research more efficient and impactful.
- Ensuring interoperability of the data: The new regulation requires all electronic health record (EHR) systems to comply with the specifications of the European electronic health record exchange format, ensuring that they are interoperable at EU level, which is one of the FAIR principles that the HEREDITARY project pursues in its data management.
- Cost-Efficiency: Streamlined access to high-quality health data reduces research costs, enabling more studies and innovations within available budgets.
Learn more about the secondary use of the health data in the EHDS by clicking here.
Looking ahead
After the signing by the Council and the European Parliament and its publication in the EU’s Official Journal, the EHDS Regulation will enter into force on 26 March 2025 and will become applicable in different phases over the course of the following years, with target dates of 2029 and 2031 for full implementation.
At HEREDITARY, we are enthusiastic about the possibilities the EHDS brings. By enabling secure and seamless data exchange, the EHDS transforms healthcare for everyone: patients, professionals, researchers, public health institutions and industry alike.
Stay tuned as we continue to explore the benefits of the EHDS for our research and the broader community. Together, we are stepping into a new era of healthcare innovation and citizen empowerment.
Access more information on this promising regulation here.
by Admin | Feb 26, 2025 | Events
The HEREDITARY consortium will take part in the upcoming JARDIN Hackathon on Health Data Federated Querying, an event organized by the European Commission. The Hackathon aims to tackle key challenges in integrating sensitive health data across multiple institutions while exploring innovative solutions. Its objectives align closely with our project’s goals, particularly in the fields of federated analytics and learning. A key focus will be enabling federated queries, allowing researchers to extract valuable insights without compromising patient privacy or data security.
This initiative brings together experts from diverse fields, fostering collaboration and knowledge exchange to address these complex issues effectively.
Key topics to be explored during the hackathon include:
- Harmonizing data exports from healthcare provider systems.
- Developing tools and methods for federated data querying.
- Enhancing semantic representation and ensuring compliance with FAIR data principles.
The event is open to professionals from various disciplines, including clinicians, data stewards, analysts, developers, and semantic web specialists, all of whom play a crucial role in advancing data harmonization and secure querying practices.
Although an official event date has not yet been set, the registration deadline for the hackathon is March 5, 2025. We invite all interested participants to seize this opportunity to contribute to the future of digital healthcare while gaining valuable insights. Check here the preliminary agenda!
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