The PROTECT-CHILD project aims to establish a secure, privacy-preserving, and ethically grounded European framework for the integration and secondary use of paediatric health and genomic data in the context of organ transplantation. Embedded within the European Reference Network TransplantChild, the project addresses the fragmentation, limited scale, and governance constraints that currently hinder robust research and personalised care for transplanted children.
PROTECT-CHILD develops an EHDS-compliant federated data ecosystem that enables the integration of real-world clinical data with genomic data generated in the context of paediatric liver and kidney transplantation. The project adopts a common data model aligned with international interoperability standards and is supported by a strong legal, ethical, and governance framework designed to protect children’s rights and foster trust in cross-border data reuse.
At its core, PROTECT-CHILD implements a Zero-Trust, analytics-to-data architecture based on EHDS capsules and secure processing environments, allowing advanced analytics, federated learning, and AI workflows to be executed directly at data-holder premises without centralising sensitive data. This approach enables large-scale, privacy-preserving data processing while remaining fully compliant with GDPR and emerging EHDS requirements.
The project’s pathway to impact is closely aligned with European health data and genomics strategies, including the European Health Data Space, the Genomic Data Infrastructure, and ELIXIR. Through a multicentric pilot in paediatric liver and kidney transplant patients, the project aims to identify genomic and methylomic biomarkers predictive of post-transplant outcomes.
