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

J Cyst Fibros. 2019 Jul;18(4):522-524. doi: 10.1016/j.jcf.2018.10.007. Epub 2018 Oct 23.

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.

Keywords: Cuba; Cystic fibrosis; Prevalence.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Child
  • Child, Preschool
  • Cuba
  • Cystic Fibrosis* / diagnosis
  • Cystic Fibrosis* / epidemiology
  • Cystic Fibrosis* / genetics
  • Female
  • Genotype
  • Humans
  • Infant
  • Male
  • Prevalence
  • Registries
  • Young Adult