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...

Ausführliche Beschreibung

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Bibliographische Detailangaben
Hauptverfasser: Viviani, Laura, Zolin, Anna, Mehta, Anil, Olesen, Hanne Vebert
Format: Artigo
Sprache:Inglês
Veröffentlicht: BioMed Central 2014
Schlagworte:
Research
Online Zugang:https://ncbi.nlm.nih.gov/pmc/articles/PMC4066270/
https://ncbi.nlm.nih.gov/pubmed/24908055
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1186/1750-1172-9-81
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