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

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.

[1]  R. Ruseckaite,et al.  The Australian Cystic Fibrosis Data Registry Annual Report, 2017 , 2018 .

[2]  J. McNeil,et al.  Rare disease registries: a call to action , 2017, Internal medicine journal.

[3]  S. Stanojevic,et al.  Survival Comparison of Patients With Cystic Fibrosis in Canada and the United States , 2017, Annals of Internal Medicine..

[4]  Margaret Rosenfeld,et al.  Diagnosis of Cystic Fibrosis: Consensus Guidelines from the Cystic Fibrosis Foundation , 2017, The Journal of pediatrics.

[5]  C. Castellani,et al.  Cystic Fibrosis Diagnostic Challenges over 4 Decades: Historical Perspectives and Lessons Learned , 2017, The Journal of pediatrics.

[6]  A. Munck,et al.  Cystic Fibrosis Transmembrane Conductance Regulator‐Related Metabolic Syndrome and Cystic Fibrosis Screen Positive, Inconclusive Diagnosis , 2017, The Journal of pediatrics.

[7]  D. Lavallee,et al.  Incorporating Patient-Reported Outcomes Into Health Care To Engage Patients And Enhance Care. , 2016, Health affairs.

[8]  S. Bell,et al.  Pseudomonas aeruginosa antibiotic resistance in Australian cystic fibrosis centres , 2016, Respirology.

[9]  S. Evans,et al.  Need for a roadmap for development of a coordinated national registry programme , 2015, Internal medicine journal.

[10]  J. Massie,et al.  Cost of care for cystic fibrosis: an investigation of cost determinants using national registry data , 2015, The European Journal of Health Economics.

[11]  R. Norman,et al.  Understanding the costs of care for cystic fibrosis: an analysis by age and health state. , 2013, Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research.

[12]  Scott C. Bell,et al.  Effect of Temperature on Cystic Fibrosis Lung Disease and Infections: A Replicated Cohort Study , 2011, PloS one.

[13]  P. Bye,et al.  Cystic fibrosis in Australia, 2009: results from a data registry , 2011, The Medical journal of Australia.