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

Laura Viviani, Anna Zolin (Lead / Corresponding author), Anil Mehta, Hanne Vebert Olesen

    Research output: Contribution to journalArticle

    36 Citations (Scopus)
    136 Downloads (Pure)

    Abstract

    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 economical and organisational points of view and experience sharing on registries management is important to avoid waste of resources. The aim of this paper is to discuss the problems embedded in the institution and management of an international disease registry to warn against common mistakes that can derail the best of intentions: we share the experience of the European Cystic Fibrosis Society Patient Registry, which collects data on almost 30,000 patients from 23 countries.
    Original languageEnglish
    Article number81
    Number of pages14
    JournalOrphanet Journal of Rare Diseases
    Volume9
    DOIs
    Publication statusPublished - 7 Jun 2014

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