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RD-RAP: beyond rare disease patient registries, devising a comprehensive data and analytic framework | Orphanet Journal of Rare Diseases | Full Text
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Solve-RD: systematic pan-European data sharing and collaborative analysis to solve rare diseases | European Journal of Human Genetics
GitHub - ejp-rd-vp/CDE-semantic-model: Semantic data model of the set of common data elements for rare disease registration
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The RD-Connect Registry & Biobank Finder: a tool for sharing aggregated data and metadata among rare disease researchers | European Journal of Human Genetics
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Solve-RD: systematic pan-European data sharing and collaborative analysis to solve rare diseases | European Journal of Human Genetics
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