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Rare disease research: Breaking the privacy barrier
Due to the few patients affected, rare disease research has to count on international registries to exist in order to produce significant research outputs. Data sharing of registries is therefore a unique resource to allow rare disease research to flourish and any lost data will jeopardize the quali...
| Autores principales: | , , |
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| Formato: | Online Artículo Texto |
| Lenguaje: | English |
| Publicado: |
Elsevier
2014
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| Materias: | |
| Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4882025/ https://www.ncbi.nlm.nih.gov/pubmed/27275410 http://dx.doi.org/10.1016/j.atg.2014.04.003 |