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

Información del proyecto

HemaFAIR

Identificador del acuerdo de subvención: 101159589

DOI

10.3030/101159589

Fecha de la firma de la CE 21 Mayo 2024

Fecha de inicio 1 Julio 2024

Fecha de finalización 30 Junio 2027

Financiado con arreglo a

• Widening participation and spreading excellence

Coste total

Sin datos

Aportación de la UE

€ 1 499 976,25

Coordinado por

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)

Período documentado: 2024-07-01 hasta 2025-09-30

Resumen del contexto y de los objetivos generales del proyecto

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.

Trabajo realizado desde el comienzo del proyecto hasta el final del período abarcado por el informe y los principales resultados hasta la fecha

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.

Avances que van más allá del estado de la técnica e impacto potencial esperado (incluida la repercusión socioeconómica y las implicaciones sociales más amplias del proyecto hasta la fecha)

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.