Cystic Fibrosis in Latin America: Clinical Practices, Diagnosis, and Therapeutic Access: a Multicenter Cross-sectional Study

Authors

  • Michelle Higuera Carrillo Universidad Nacional de Colombia, Facultad de Medicina, Departamento de pediatría, Universidad El Bosque, Facultad de Medicina, Hospital Universitario Infantil San José. https://orcid.org/0000-0002-0876-7885
  • María Cristina Arregui Hospital de Niños Sor María Ludovica. Ciudad de La Plata, Buenos Aires. Argentina. https://orcid.org/0000-0002-5643-8912
  • María Soledad Arcucci Hospital Italiano de Buenos Aires/Hospital de niños Ricardo Gutiérrez Buenos Aires. Argentina. https://orcid.org/0000-0001-5699-8277
  • Magali Reyes-Apodaca Hospital Infanil de México Federico Gómez, Unidad de Investigación y Medicina Traslacional. https://orcid.org/0000-0001-6211-7843
  • Elizabeth Navarro Díaz Hospital de Curicó, Chile. https://orcid.org/0009-0002-3479-4139
  • Violeta Sereno Crenadecer BPS centro de FQ.
  • Gabriela Oropeza Gianfelici Hospital Infantil Municipal. https://orcid.org/0000-0003-0210-7242
  • Magaly Rodríguez Guerrero Hospital de Niños JM de los Rios Caracas Venezuela.
  • María Clara Jijón Andrade Hospital Metropolitano, Quito, Ecuador. https://orcid.org/0000-0002-9858-7369
  • Mario Alomía Investigación en Salud / Unidad de Nutrición pediátrica. Facultad de Ciencias de la Salud y Bienestar Humano / Departamento de Nutrición pediátrica. Universidad Tecnológica Indoamérica / Centro Médico Meditrópoli. Quito-Ecuador https://orcid.org/0000-0001-9687-6506
  • Gustavo Boldrini Servicio de Gastroenterología, Hepatología y Trasplante Hepático pediátrico. Departamento de Pediátrica. Hospital Italiano de Buenos Aires. Argentina. https://orcid.org/0000-0002-3187-7433
  • Natali González Rozó Gastroenteróloga pediatra. Universidad de Pamplona, Cúcuta Colombia. https://orcid.org/0000-0002-6192-136X
  • Pierangela Previte Nastasi Universidad Nacional de Colombia, Facultad de Medicina, Departamento de pediatría. Colombia https://orcid.org/0009-0006-8977-2104
  • Lourdes Ortiz Paranza Centro Nacional de Fibrosis Quística. Hospital General Pediátrico Niños de Acosta Ñu. Ministerio de Salud Pública y Bienestar Social. Asunción- Paraguay

DOI:

https://doi.org/10.52787/agl.v56i3.583

Keywords:

Cystic fibrosis, Latin America, diagnosis, multidisciplinary care, CFTR modulators

Abstract

Introduction. Cystic fibrosis is a condition that requires early diagnosis, multidisciplinary follow-up, and access to specialized therapies. The diversity of healthcare systems in Latin America could affect the quality of care.

Objetive. The objective was to describe clinical practices, diagnostic resources, and access to therapies at centers that care for patients with cystic fibrosis in the region.

Methods. A descriptive cross-sectional study was conducted using an online survey administered in 2024 to 101 healthcare professionals in Latin America. The study examined institutional characteristics, care burden, availability of neonatal screening, multidisciplinary organization, diagnostic methods, and access to CFTR modulators.

Results. A total of 101 responses from healthcare professionals were analized; 52 respondents (51.5%) worked in centers specializing in cystic fibrosis and 49 (48.5%) in non-specialized centers, a distribution that accounts for 100% of the sample. Respondents working in specialized centers had a higher patient burden and more comprehensive multidisciplinary teams. Neonatal screening and the sweat test were reported as available by 58 (57.4%) and 50 (49.5%) of the respondents, respectively. Genetic testing and CFTR modulators showed limited and variable availability across countries.

Conclusions. Cystic fibrosis care in Latin America is heterogeneous. Standardizing protocols, strengthening specialized centers, and improving access to molecular diagnosis and advanced therapies are regional priorities that would enhance timely diagnosis and treatment, as well as patient survival.

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Published

2026-09-30

How to Cite

Higuera Carrillo, M., Arregui, M. C., Arcucci, M. S., Reyes-Apodaca, M., Navarro Díaz, E., Sereno, V., Oropeza Gianfelici, G., Rodríguez Guerrero, M., Jijón Andrade, M. C., Alomía, M., Boldrini, G., González Rozó, N., Previte Nastasi, P., & Ortiz Paranza, L. (2026). Cystic Fibrosis in Latin America: Clinical Practices, Diagnosis, and Therapeutic Access: a Multicenter Cross-sectional Study. Acta Gastroenterológica Latinoamericana, 56(3), 342–351. https://doi.org/10.52787/agl.v56i3.583

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