Optimism, opportunities, outcomes: the Australian Cystic Fibrosis Data Registry

Susannah Ahern, Geoff Sims, Arul Earnest, Scott C. Bell

Research output: Contribution to journalArticleOtherpeer-review

3 Citations (Scopus)

Abstract

The Australian Cystic Fibrosis Data Registry is positioning itself as an exemplar of a rare disease registry for the future. While it continues to inform cystic fibrosis (CF) clinicians of patterns of CF disease and quality of care, its capability is increasing as a resource for further research into CF subpopulations, as a platform for clinical trials, and as an interface for patient experiences.

Original languageEnglish
Pages (from-to)721-723
Number of pages3
JournalInternal Medicine Journal
Volume48
Issue number6
DOIs
Publication statusPublished - 1 Jun 2018

Keywords

  • clinical trial
  • cystic fibrosis
  • patient-reported outcome
  • quality improvement
  • registry
  • research

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