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- W2017671186 abstract "• Population-based disease registries are key instruments for rare diseases (RD) research. • The Spain Rare Disease Registry (Spain-RDR) is an IRDiRC project aimed at creating a national population-based RD registry. • This paper provides a comprehensive description of rare disease data sources in Spain. • The estimated number of RD that may be linked to the Spain-RDR is around 1200. • The Spain-RDR will contribute to improving the planning and management of these diseases." @default.
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- W2017671186 date "2015-03-01" @default.
- W2017671186 modified "2023-10-16" @default.
- W2017671186 title "Identifying data sources for a national population-based registry: the experience of the Spanish Rare Diseases Registry" @default.
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- W2017671186 doi "https://doi.org/10.1016/j.puhe.2014.12.013" @default.
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