Challenges in the Maintenance of FAIR-compliant Paediatric Data-Sharing Repositories

To meet the growing need for strong clinical evidence on a global scale, both public and private sectors have invested to standardise health data elements and achieve greater connectivity and interoperability of health data systems. This is enabled by FAIRification (making Findable, Accessible, Interoperable, and Reusable) of clinical trial data increasingly recognised as a crucial step in enhancing the value and utility of clinical data across the research community. This is even more relevant in the paediatric and rare disease field where data remains highly fragmented in terms of data collection practices, ontologies, and clinical reporting standards, and often locked in silos with diverse formats and standards.