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Linked Registries: Connecting Rare Diseases Patient Registries through a Semantic Web Layer
Primary prevention as an essential factor ensuring sustainability of health systems: the example of congenital anomalies.
Recommendations for Improving the Quality of Rare Disease Registries
The EPIRARE proposal of a set of indicators and common data elements for the European platform for rare disease registration
The RD-Connect Registry & Biobank Finder: a tool for sharing aggregated data and metadata among rare disease researchers.