Under a global lens, the impact of hematological diseases is staggering

Unfortunately, as is common for rare diseases, both the scarcity and fragmentation of available data prevent researchers from reaching the critical mass required for pushing forward basic and clinical research, and heavily impacts health authorities’ capabilities for effective health planning.

Moreover, their underrepresentation in coding systems highlights the complexity of tracing patient pathways within healthcare systems, thus limiting the long-term sustainability of existing and new patient registries established at national and European levels.

SYNTHEMA aims to establish a cross-border health data hub for rare haematological diseases: a space to develop and validate innovative AI-based techniques for clinical data anonymisation and synthetic data generation (SDG). The ultimate ambition is to address the issues around data scarcity and fragmentation to effectively widen the basis for meaningful, GDPR-compliant research in this disease space.

As a consortium partner, i~HD supports the ethical, legal and regulatory compliance challenges for the development of synthetic data generation using latest AI technology.