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!
by Admin | Dec 5, 2024 | Hereditary
We are delighted to introduce our latest video series, made by our partner Observa in the framework of the HEREDITARY project. Guided by Stephen McNamara, a research instructor at the University of Colorado Anschutz Medical Campus, we delve into the potential of AI for early diagnosis of neurodegenerative diseases and ways of communicating with patients and the public.
Each video offers a closer look at the research group’s objectives, methodology, and layers, helping you to understand the impact of this pioneering work on healthcare and data research.
This video series is part of the HEREDITARY voices series.
Episode 1. Clinical tools for diagnosis
In this first episode, Stephen McNamara explains how they are trying to find ocular biomarkers that are able to connect imaging in the eye to broader systemic diseases, such as Parkinson. By looking at images and scans from the back of the eye, they can ultimately determine whether someone has a neurodegenerative disease now or in a near future. In that way, invasive imaging or testing can be avoided, eliminating the uncertainties surrounding these diagnoses.
Episode 2. The Eye: The mirror of the body
The research group is making diagnoses and establishing connections between the whole body from a detailed analysis of the eye. By doing so, it increases certainty about different diseases, improves predictions and helps patients receive specific therapies and treatments.
Episode 3. Information, AI and Decision Making
Information is key, not only to train models to make better disease predictions, but also to ensure that patients are aware of these new scientific treatments and how it can affect their lives. Transparency becomes increasingly relevant in a world where AI is a new and evolving feature.
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