The HemaFAIR project (Grant Agreement No. 101159589) continues to make strong progress with the development of the Cyprus Haemoglobinopathy Patient Registry.
The registry has already gathered a substantial number of patient records, providing a robust foundation for advancing research and improving the understanding of haemoglobinopathies in Cyprus.
A distinctive feature of the registry is the inclusion of Patient Reported Outcome Measures (PROMs), ensuring that patient perspectives and lived experiences are systematically captured alongside clinical data. This approach strengthens the relevance and impact of the collected information.
Work is also underway to FAIRify the registry data, making it Findable, Accessible, Interoperable, and Reusable. This will support secure data use through federated analysis approaches, enabling collaborative research while maintaining data privacy.
This progress represents an important step toward more effective, patient-centered, and data-driven research within Cyprus and across the broader European research community.