The importance of data issues when comparing cystic fibrosis registry outcomes between countries: Are annual review FEV1 in the UK only collected when subjects are well?
Author:
Affiliation:
1. School of Health and Related Research (ScHARR); University of Sheffield; Sheffield UK
2. Sheffield Adult CF Centre; Northern General Hospital; Sheffield UK
Funder
Research Trainees Coordinating Centre
Publisher
Wiley
Subject
Public Health, Environmental and Occupational Health,Health Policy
Link
http://onlinelibrary.wiley.com/wol1/doi/10.1111/jep.12967/fullpdf
Reference23 articles.
1. Cystic fibrosis;Elborn;Lancet,2016
2. Longevity of patients with cystic fibrosis in 2000 to 2010 and beyond: survival analysis of the Cystic Fibrosis Foundation patient registry;MacKenzie;Ann Intern Med,2014
3. A comparison of survival, growth, and pulmonary function in patients with cystic fibrosis in Boston and Toronto;Corey;J Clin Epidemiol,1988
4. Evidence-based practice recommendations for nutrition-related management of children and adults with cystic fibrosis and pancreatic insufficiency: results of a systematic review;Stallings;J Am Diet Assoc,2008
5. Comparison of the US and Australian cystic fibrosis registries: the impact of newborn screening;Martin;Pediatrics,2012
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1. Lung function in children with cystic fibrosis in the USA and UK: a comparative longitudinal analysis of national registry data;Thorax;2021-05-11
2. Understanding FEV 1 for the purpose of cystic fibrosis registry comparisons: Does bias in annual review FEV 1 affect between‐centre comparison within the UK? An analysis of registry data;Journal of Evaluation in Clinical Practice;2019-01-25
3. Investigating the effects of long-term dornase alfa use on lung function using registry data;Journal of Cystic Fibrosis;2019-01
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