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.
Silvia Josefina Venero-Fernández
ALAN SMYTH email@example.com
Professor of Child Health
Siobhán B. Carr
ANDREW FOGARTY firstname.lastname@example.org
Clinical Associate Professor & Reader in Clinical Epidemiology
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|
|Peer Reviewed||Peer Reviewed|
|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|
|Keywords||cystic fibrosis, Cuba, prevalence|
CF Registry Cuba Revised V1