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

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

doi:10.1111/imj.13807

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

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

Research output: Contribution to journal › Article › Other › peer-review

10 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 language	English
Pages (from-to)	721-723
Number of pages	3
Journal	Internal Medicine Journal
Volume	48
Issue number	6
DOIs	https://doi.org/10.1111/imj.13807
Publication status	Published - 1 Jun 2018

Keywords

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

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10.1111/imj.13807

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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.",

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AB - 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.

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KW - patient-reported outcome

KW - quality improvement

KW - registry

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

Abstract

Keywords

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