The European Cystic Fibrosis Society Patient Registry: valuable lessons learned on how to sustain a disease registry

Abstract excerpt

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 trials enrolment. However, the establishment and maintenance of disease registries is a burdensome initiative from...

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