HEREDITARY strengthens its international presence this October: RIES Forum and Brain Innovation Days

by | Sep 26, 2025 | Events, Hereditary

The HEREDITARY Project will be present at two major events this October: the X RIES Forum in Galicia (Spain) and the V Brain Innovation Days in Brussels (Belgium), both on 15-16 October 2025.

Each participation aims to strengthen collaboration and foster dialogue with key stakeholders across the European health ecosystem.

 

RIES 2025: International Challenges of the Health Ecosystem

HEREDITARY will join the X Fórum RIES, focus on International Challenges of the Health Ecosystem, held at La Toja Island, O Grove (Galicia, Spain).  Organised by the Cluster Saúde de Galicia (CSG), RIES has become a leading forum that brings together leaders across the entire healthcare value chain. Celebrating its 10th edition, the event will once again serve as a platform for debate, innovation, and international cooperation, with a strong focus on digitalisation, sustainability, and the internationalisation of the health ecosystem.

As part of the event’s second day, on October 16 at 10:15, the roundtable on genomic medicine will feature Abeer Fadda, bioinformatics lead at the European Genome-phenome Archive (EGA) and researcher in the HEREDITARY project. She will join other speakers from NTT Data, Xenoma Galicia Project, PM4GOV and AWS to discuss advances in data-driven healthcare, explore how cutting-edge technologies are transforming genomic research, and reflect on the challenges of ensuring secure, ethical, and scalable applications of genomic data in clinical and health contexts.

Also, HEREDITARY will be present with a stand in the exhibition area, offering participants the opportunity to learn more about the project’s vision, activities, and expected impact.

If you are interested in attending the event, here is a link with the tickets information: https://ries2025.serglo.es/

 

HEREDITARY World Café at Brain Innovation Days

In parallel, HEREDITARY will also take part in the 5th edition of the Brain Innovation Days, organised by the European Brain Council (EBC) in Brussels under the theme “The Adaptive Brain in a Fast-Evolving World”.

As part of the programme, it will be hosted a special session HEREDITARY-targeted: HEREDITARY World Café on 16 October from 09:15 to 10:30 CET. Designed as an informal and interactive format, the session will bring together participants from diverse backgrounds to explore key questions related to brain and health. Small groups will rotate across tables every 20 minutes, generating fresh insights and perspectives. At the end of the day, a HEREDITARY project representative will report back the discussions on the main stage of the Brain Innovation Days.

More information, on the concept note here.

To get a head start on the topics to be explored during the World Café, we encourage participants to check out the podcast launched this summer as part of the Brain Talks series, also organised by the Brain Innovation Days. The podcast introduces several of the key themes that will be discussed during the session, such as data privacy, multimodal health data or AI powered solutions, providing valuable context and sparking new ideas ahead of the session.

 

With its active presence at both RIES Forum and Brain Innovation Days, the HEREDITARY Project continues to expand its international reach, fostering collaboration and knowledge Exchange across the European health ecosystem.

Synthetic Data: unlocking innovation without compromising privacy

by | 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.

Strategic synergies to advance Health Data Innovation: Collaboration Agreement with DataGEMS

by | 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.

World Parkinson’s Day: The HEREDITARY Project’s Role in a Growing Global Challenge

by | 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.