The Dutch National Node, represented by the Stichting Duchenne Data Foundation (DDF), provides a secure and scalable digital infrastructure for paediatric and rare disease research, supporting the full data lifecycle through integrated data governance, stewardship, interoperability, and advanced analytics in compliance with GDPR, ISO standards, and FAIR principles, and functioning as a digital and methodological hub enabling secure data sharing, FAIR data transformation, ethical AI assessment, and transparent data reuse in paediatric research across Europe.
DDF offers Data Management Plan (DMP) services to support researchers in producing funder-compliant plans aligned with Horizon Europe requirements, including data protection, metadata standards, anonymisation, and long-term preservation. It also provides secure federated data sharing environments enabling controlled access to clinical, genomic, imaging, and preclinical data through cloud platforms, APIs, and virtual research environments. In parallel, DDF develops FAIRification and data harmonisation services, transforming heterogeneous datasets into interoperable resources using standards such as HL7 FHIR, OMOP, and biomedical ontologies (e.g. HPO, SNOMED CT), alongside de-identification, metadata enrichment, and quality control processes. Advanced geolocation-driven data visualisation services enable interactive mapping and analysis of health and clinical data through web-based GIS platforms, supporting research, epidemiology, and decision-making. DDF also provides Ethics-by-Design AI evaluation services assessing fairness, transparency, explainability, and human oversight in AI systems trained on real-world data, producing structured audit reports aligned with EU regulatory frameworks. Finally, DDF supports transparency and communication protocols for secondary use of health data, developing layered consent tools and co-design approaches to ensure meaningful engagement of paediatric patients and caregivers.