We are pleased to share a new publication developed in collaboration between the HELIOS network and the HemaFAIR project, recently published in Scientific Data.
The article, “FAIR data gaps and collaboration willingness among hemoglobinopathy research centers,” presents the results of a survey conducted among centres involved in hemoglobinopathy research. The study explores current data management practices, the level of adoption of FAIR data principles (Findable, Accessible, Interoperable, and Reusable), and the willingness of centres to participate in data sharing and collaborative research initiatives.
The findings highlight important gaps in FAIR data implementation, as well as opportunities to strengthen collaboration, harmonize data practices, and improve the research infrastructure supporting hemoglobinopathy studies. These insights contribute to the broader goals of the HemaFAIR project, which aims to promote FAIR data standards and facilitate responsible data sharing within the hemoglobinopathy research community.
This work represents an important step toward building a more interoperable and collaborative data ecosystem, supporting better research and ultimately improved outcomes for individuals affected by hemoglobinopathies.
🔗 Read the full publication: https://doi.org/10.1038/s41597-026-06950-9
Citation
Tamana, S., Yiangou, K., Orphanou, K., Chatzimatthaiou, S., Kountouris, P., and Cremonesi, F. (2026). FAIR data gaps and collaboration willingness among hemoglobinopathy research centers. Scientific Data. https://doi.org/10.1038/s41597-026-06950-9