sábado, 3 de noviembre de 2018

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

2018 Oct 23. pii: S1569-1993(18)30859-2. doi: 10.1016/j.jcf.2018.10.007. [Epub ahead of print]

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

Rodríguez-Calá F1, Suárez-Medina R2, Venero-Fernández SJ2, Smyth A3, Carr SB4, Fogarty AW5.

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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.