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The prevalence, clinical status and genotype of cystic fibrosis patients living in Cuba using national registry data

Rodríguez-Calá, Fidel; Suárez-Medina, Ramón; Josefina Venero-Fernández, Silvia; Smyth, Alan; Carr, Siobhán B.; Fogarty, Andrew W.

Authors

Fidel Rodríguez-Calá

Ramón Suárez-Medina

Silvia Josefina Venero-Fernández

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ALAN SMYTH alan.smyth@nottingham.ac.uk
Professor of Child Health

Siobhán B. Carr

ANDREW FOGARTY andrew.fogarty@nottingham.ac.uk
Clinical Associate Professor & Reader in Clinical Epidemiology



Abstract

Background: We aimed to establish a national cystic fibrosis (CF) registry for Cuba, a developing country.
Methods: Regional centres that deliver care for all CF patients provided information for a national database.
Findings: The prevalence of CF in Cuba is 26.3 cases per 1,000,000 population. The median age at diagnosis is 2 years, and the median age of the total population was 15 years. Of those aged 16 years or older, the prevalence of Pseudomonas aeruginosa infection was 46%, the prevalence of Staphylococcus aureus infection was 36%, and 80% of individuals were receiving oral azithromycin. The commonest gene mutation was F508del which was observed in 50% of patients.
Interpretation: These data demonstrate that it is possible to establish a national CF registry in a developing country such as Cuba. This provides baseline data to permit evaluation of health care delivery enable the spread of good clinical practice nationally.

Journal Article Type Article
Publication Date 2019-07
Print ISSN 1569-1993
Publisher Elsevier
Peer Reviewed Peer Reviewed
Volume 18
Issue 4
Pages 522-524
APA6 Citation Rodríguez-Calá, F., Suárez-Medina, R., Josefina Venero-Fernández, S., Smyth, A., Carr, S. B., & Fogarty, A. W. (2019). The prevalence, clinical status and genotype of cystic fibrosis patients living in Cuba using national registry data. Journal of Cystic Fibrosis, 18(4), 522-524. doi:10.1016/j.jcf.2018.10.007
DOI https://doi.org/10.1016/j.jcf.2018.10.007
Keywords cystic fibrosis, Cuba, prevalence
Publisher URL https://www.sciencedirect.com/science/article/pii/S1569199318308592
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