PROTECT-CHILD is a project that aims to improve the outcomes of rare pediatric transplant patients by integrating multiple sources of high-throughput data from registries, hospital-based and public repositories, complying with ongoing initiatives such as the European Open Science Cloud (EOSC) and the European Health Data Space (EHDS). The project focuses on the co-design of a secure and privacy-preserving infrastructure, harmonization of data standards, and creation of a public/private infrastructure for assembling large datasets to improve clinical outcomes. The project involves top-level expertise from a consortium of technology specialists, data standardization experts, and High-Performance Computing (HPC) centers, as well as clinical experts, legal experts, patients’ representatives, and policy makers. The project is aligned with EHDS and General Data Protection Regulation (GDPR) principles and aims to empower secure and compliant processing, analysis, and sharing of sensitive personal data, including genomics, while preserving data privacy and security.

After the primary intervention, most of cancer patients are managed at home, facing long-term treatments or sequelae, making the disease comparable to a chronic condition. Despite their benefit, strong therapeutic regimens often cause toxicity, severely impairing quality of life. This may decrease adherence to treatment, thus compromising therapeutic efficacy. Also due to age-related multimorbidity, patients and their caregivers develop emotional, educational and social needs. CAPABLE will develop a cancer patient coaching system with the objective of facing these needs/issues. The time is right to fully exploit Artificial Intelligence (AI) and Big Data potentialities for cancer care and bring them to patients’ home. CAPABLE will rely on predictive models based on both retrospective and prospective data (clinical data, data from unobtrusive environmental and wearable sensors, data from social media and questionnaires). Models will be integrated with existing clinical practice guidelines and made available to oncologists. Thanks to the mobile coaching system for patients, CAPABLE will allow identifying unexpected needs, and providing patient-specific decision support. This feature, together with the chance of discovering unknown adverse effects of new treatments, makes CAPABLE more than a personalised tool for improving life quality, an advance for the whole research community. Our team includes complementary partners with experience in data- and knowledge-driven AI, data integration, telemedicine, decision support. In addition, the involved patients’ association gives a unique opportunity to access thousands of questionnaires on patients’ needs, which will inform the system design. The project addresses EU priorities such as shifting care from hospitals to home to face scarcity of healthcare resources, facilitating patients’ re-integration in the society and in the labour market, and ensuring all EU citizens to benefit from an effective, novel cancer care model.