HemaFAIR and the HELIOS network have jointly published a new article in Scientific Data examining FAIR data gaps and collaboration willingness among hemoglobinopathy research centres. The study presents the results of a survey assessing current data management practices, the implementation of FAIR principles (Findable, Accessible, Interoperable, and Reusable), and the readiness of research centres to engage in data sharing and collaborative initiatives.
The findings highlight key challenges in achieving interoperable and reusable research data across centres, while also identifying opportunities to strengthen coordination and collaboration within the hemoglobinopathy research community. By mapping the current landscape of data practices, the study provides valuable insights to support the development of more harmonised and FAIR-aligned data infrastructures.
This collaborative work reflects the shared goals of HemaFAIR and HELIOS to advance FAIR data practices, improve interoperability of health data, and strengthen international collaboration in hemoglobinopathy research.
HemaFAIR contributed to the European Medicines Agency (EMA) public consultation on the Reflection Paper on Patient Experience Data, providing input based on its work on FAIR health data, patient engagement and registry development in haemoglobinopathies. The contribution reflects the project’s ongoing development of patient-reported outcome measures (PROMs) for the Cyprus National Haemoglobinopathies Registry and for the ITHANET international dataset, aiming to enable the systematic and interoperable collection of data that directly capture patients’ perspectives.
By aligning registry infrastructures with FAIR principles and regulatory needs, HemaFAIR supports the integration of high-quality, representative and reusable patient experience data across the medicines lifecycle, from research and clinical studies to regulatory and health technology assessment processes.
