Imagine two hospitals collecting information about patients with the same neurological disease. Both have valuable data for researchers, perhaps to find a better treatment. Both are willing to collaborate with researchers. And yet, nobody outside these hospitals know exactly what data exist or whether they could help them in their research of the disease. As a result, these two potentially valuable datasets remain invisible, even though they could contribute to improving the life of the patients.
This is one of the less visible, but most important, challenges in modern biomedical research.Before researchers can analyse data, they first need to know that the data exist. That is where FAIRification comes in. Check out the following video, in which Marcos Casado, Senior Metadata Bioinformatician at EMBL-EBI, explains it:
Within HEREDITARY, Work Package 3 is not only building the technological infrastructure for federated analytics and semantic interoperability. It is also ensuring that the project’s data resources become easier to find, understand and reuse, while always respecting privacy, institutional ownership and legal requirements. This work was included in Deliverable D3.6, FAIRification of Participating Data Resources, and the successful achievement of Milestone 7 at the end of 2025.
FAIR does not mean open. Sensitive clinical and genomic data often cannot leave the institutions that generated them, due to legal and ethical constraints. HEREDITARY’s proposed FAIRification focuses on making datasets discoverable, before access to sensitive data is even considered. This way, researchers can understand what information exists, under which conditions it may be accessed and how it relates to other resources, without exposing any sensitive information. In essence, it promotes collaboration across institutions while respecting the aforementioned constraints.
Making this possible begins with something that may seem surprisingly simple: describing data better. Every dataset carries information beyond the measurements themselves, such as how it was generated, what variables it contains, which standards were used or under which conditions it can be shared. This information, known as metadata, acts as a guide for both researchers and computers. HEREDITARY works to harmonise these descriptions using internationally recognised standards and controlled vocabularies, creating a common language that allows clinical, genomic and imaging datasets to be understood consistently across institutions and countries.
Beyond the project itself, FAIRification also prepares HEREDITARY for future European collaboration. To achieve this, the project aligns its metadata with internationally recognised frameworks and recommendations, including those promoted by the 1+ Million Genomes initiative (1+MG), the Global Alliance for Genomics and Health (GA4GH) and the European Health Data Space (EHDS). These shared standards ensure that today’s datasets can continue supporting tomorrow’s research. In this way, HEREDITARY is not only developing new technologies, but also contributing to a more connected, interoperable and trustworthy European research ecosystem.
Over the past two years, the project has assessed participating datasets and implemented practical FAIRification workflows adapted to different situations. Some of the results presented in Deliverable 3.6 are:
- Richer metadata descriptions for consortium datasets.
- Harmonisation of metadata across participating institutions.
- Preparation of selected datasets for deposition in the European Genome-phenome Archive (EGA).
- Publication of metadata records following European HealthDCAT-AP recommendations.
- Reusable FAIRification workflows for future datasets.
- Quality assessment procedures to monitor improvements over time.
If you would like to explore FAIRification in more detail, check out how FAIRification moves from theory to real-world implementation in biomedical research:
FAIRification is about ensuring that valuable health data remain discoverable, understandable and reusable while fully complying with the General Data Protection Regulation (GDPR) and respecting the autonomy of the institutions that generate them. By building on internationally recognised standards, trusted repositories and established European infrastructures, HEREDITARY is creating the conditions for future scientific collaboration that extends well beyond the lifetime of the project. Combined with semantic interoperability, federated analytics and privacy-preserving infrastructures, FAIRification forms another essential pillar of HEREDITARY’s vision: enabling a more connected, trustworthy and collaborative ecosystem for biomedical research across Europe.
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