Fostering F.A.I.R. Data and Standards in Rare Hematological Diseases

Project Information

HemaFAIR

Grant agreement ID: 101159589

DOI

10.3030/101159589

EC signature date 21 May 2024

Start date 1 July 2024

End date 30 June 2027

Funded under

• Widening participation and spreading excellence

Total cost

No data

EU contribution

€ 1 499 976,25

Coordinated by

KYPRIAKO IDRYMA EREVNON GIA TI MYIKI DISTROFIA
Cyprus

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

Summary of the context and overall objectives of the project

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.

Work performed from the beginning of the project to the end of the period covered by the report and main results achieved so far

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.

Progress beyond the state of the art and expected potential impact (including the socio-economic impact and the wider societal implications of the project so far)

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.