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...

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Detalles Bibliográficos
Autores principales: Viviani, Laura, Zolin, Anna, Mehta, Anil, Olesen, Hanne Vebert
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2014
Materias:
Research
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

Internet

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

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