In July 2025, the second HemaFAIR Short-Term Staff Exchange (STSE) was successfully held in the Netherlands. Dr. Stella Tamana, Laboratory Scientific Officer at the Cyprus Institute of Neurology and Genetics, visited our partners at Leiden University Medical Centre (LUMC) and Amsterdam UMC (AUMC) for an intensive training programme on the FAIRification of rare disease data and semantic modelling strategies.
About Leiden University Medical Centre and Amsterdam UMC
Leiden University Medical Centre is a leading organisation in FAIR data and semantic interoperability research, playing a key role in developing FAIR Data Points (FDP), semantic models, and linked data standards.
The Amsterdam University Medical Centre actively participates in biomedical informatics, clinical registries, and advanced data infrastructure, supporting national and European initiatives to standardise research data in accordance with the FAIR principles.
Objectives and Achievements of the STSE
The STSE aimed to strengthen the Biomedical and Translational Informatics (BTI) team’s ability at the Cyprus Institute of Neurology and Genetics to carry out the entire FAIRification workflow on patient registry data, with an emphasis on FAIR (meta)data tools and standards. Over five days, Dr. Tamana attended expert-led sessions on goal-oriented conceptual modelling, FAIR metadata publication techniques, and data exchange standards.
The exchange led to the creation of a FAIRification prioritisation roadmap tailored for the two HemaFAIR use cases: the Cyprus Haemoglobinopathies Patient Registry and INHERENT. It clarified the sequence of semantic modelling, data transformation, and metadata publication, and explored how FAIRified datasets can be made discoverable through FAIR Data Points.
Planning Future Initiatives
Following this STSE, Dr. Tamana will implement the methods and tools learned to fully adopt the FAIR principles for both HemaFAIR use cases. The next steps include establishing a comprehensive FAIRification pipeline, beginning with semantic modelling and the Extract–Transform–Load (ETL) processes necessary to support both data exchange standards and FAIR metadata publication. This exchange significantly contributes to the HemaFAIR mission of creating interoperable and reusable data infrastructures for rare diseases.