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Optimism, opportunities, outcomes: the Australian Cystic Fibrosis Data Registry
Author(s) -
Ahern Susannah,
Sims Geoff,
Earnest Arul,
C. Bell Scott
Publication year - 2018
Publication title -
internal medicine journal
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.596
H-Index - 70
eISSN - 1445-5994
pISSN - 1444-0903
DOI - 10.1111/imj.13807
Subject(s) - medicine , optimism , cystic fibrosis , intensive care medicine , patient registry , family medicine , psychology , social psychology
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.