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The European Cystic Fibrosis Society Patient Registry: valuable lessons learned on how to sustain a disease registry
BACKGROUND: Disease registries have the invaluable potential to provide an insight into the natural history of the disease under investigation, to provide useful information (e.g. through health indicators) for planning health care services and to identify suitable groups of patients for clinical tr...
| Autores principales: | , , , |
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| Formato: | Online Artículo Texto |
| Lenguaje: | English |
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BioMed Central
2014
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| Materias: | |
| Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4066270/ https://www.ncbi.nlm.nih.gov/pubmed/24908055 http://dx.doi.org/10.1186/1750-1172-9-81 |