Periodic Reporting for period 1 - HemaFAIR (Fostering F.A.I.R. Data and Standards in Rare Hematological Diseases)
Reporting period: 2024-07-01 to 2025-09-30
HemaFAIR strengthens the scientific capacity and competitiveness of the Cyprus Institute of Neurology and Genetics by introducing FAIR data principles to rare haematological disease research. The project addresses fragmented data and limited data reuse, modernises the national haemoglobinopathy registry and integrates Patient Reported Outcome Measures for the first time in Cyprus. It also delivers extensive training, mentoring and staff exchanges while enhancing CING’s administrative and project management capabilities.
During the first reporting period HemaFAIR launched its website, visual identity, newsletters and webinar series and was showcased at major European events. A training needs survey informed a targeted capacity building programme that included a FAIR training school and multiple webinars. Scientifically, the project secured ethical approval for PROMs, implemented TranQoL and SF 36 in REDCap, collected initial responses, created ontology mappings and conceptual models, set up a FAIR Data Point and initiated OMOP CDM mapping, supported by GDPR compliant ELSI guidance.
HemaFAIR introduced the first structured FAIRification workflow for rare haematological diseases in Cyprus, improving interoperability, metadata quality and patient centred data collection. CYHAPR was integrated into ERDRI with GDPR compliant pseudonymisation, PROMs were operationalised and semantic models and ontology mappings were developed. Combined with the foundations for federated analytics, these advances position Cyprus as a regional leader in FAIR aligned rare disease research.