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

Informazioni relative al progetto

HemaFAIR

ID dell’accordo di sovvenzione: 101159589

DOI

10.3030/101159589

Data della firma CE 21 Maggio 2024

Data di avvio 1 Luglio 2024

Data di completamento 30 Giugno 2027

Finanziato da

• Widening participation and spreading excellence

Costo totale

Nessun dato

Contributo UE

€ 1 499 976,25

Coordinato da

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)

Periodo di rendicontazione: 2024-07-01 al 2025-09-30

Sintesi del contesto e degli obiettivi generali del progetto

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.

Lavoro eseguito dall’inizio del progetto fino alla fine del periodo coperto dalla relazione e principali risultati finora ottenuti

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.

Progressi oltre lo stato dell’arte e potenziale impatto previsto (incluso l’impatto socioeconomico e le implicazioni sociali più ampie del progetto fino ad ora)

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.