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

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

doi:10.1016/j.jcf.2018.10.007

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

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

^*Corresponding author for this work

Research output: Contribution to journal › Article › peer-review

3 Citations (Scopus)

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.

Original language	English
Pages (from-to)	522-524
Number of pages	3
Journal	Journal of Cystic Fibrosis
Volume	18
Issue number	4
Early online date	23 Oct 2018
DOIs	https://doi.org/10.1016/j.jcf.2018.10.007
Publication status	Published - Jul 2019
Externally published	Yes

Bibliographical note

Funding Information:
Thanks to the Morriston-Scadding Fellowship/British Thoracic Society, British Medical Association/James Trust and the University of Nottingham.

Publisher Copyright:
© 2018

Keywords

Cuba
Cystic fibrosis
Prevalence

ASJC Scopus subject areas

Pediatrics, Perinatology, and Child Health
Pulmonary and Respiratory Medicine

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10.1016/j.jcf.2018.10.007Licence: Other

Cite this

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

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.",

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T1 - The prevalence, clinical status and genotype of cystic fibrosis patients living in Cuba using national registry data

AU - Rodríguez-Calá, Fidel

AU - Suárez-Medina, Ramón

AU - Venero-Fernández, Silvia Josefina

AU - Smyth, Alan

AU - Carr, Siobhán B.

AU - Fogarty, Andrew W.

PY - 2019/7

Y1 - 2019/7

N2 - 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.

AB - 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.

KW - Cuba

KW - Cystic fibrosis

KW - Prevalence

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DO - 10.1016/j.jcf.2018.10.007

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JO - Journal of Cystic Fibrosis

JF - Journal of Cystic Fibrosis

IS - 4

ER -

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

Abstract

Bibliographical note

Keywords

ASJC Scopus subject areas

Access to Document

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Cite this