Global Collaboration in Cystic Fibrosis: Lessons From the COVID-19 Pandemic for Low- and Middle-Income Countries

Cystic fibrosis (CF) is a genetic disease that affects individuals across the globe, yet people with CF (pwCF) in low- and middle-income countries (LMICs) have historically been under-represented in research due to diagnostic barriers, limited resources, and lack of registry infrastructure.

The COVID-19 pandemic created an urgent need for real-time, standardized data on SARS-CoV-2 infection in pwCF. The aim of this work was to determine the impact of infection on the CF community.

Leveraging existing international relationships and national registries, CF leaders rapidly mobilized a global collaboration spanning 47 countries, integrating both high-income countries (HICs) and LMICs. The global CF community developed standardized data definitions and offered multiple collection platforms, including registry extractions, REDCap databases, and Excel-based forms, minimizing technical requirements and allowing centers without registries to contribute. Data were collated and analyzed to quantify the impact of SARS-CoV-2 infection on lung function as well as to identify those at risk for hospitalization and death.

Through this international effort, data were collected on over 7000 pwCF diagnosed with COVID-19 across 47 countries, and 6500 were included in the analysis, of which 515 cases were from an LMIC. Most pwCF who contracted COVID-19 experienced mild or moderate illness. Severe outcomes, including hospitalization and mortality, did occur but were generally confined to individuals with advanced lung disease, those who had received lung transplants, or those with other high-risk factors.

The global CF COVID-19 initiative demonstrated that flexible, low-cost tools, capacity building, and intentional engagement of LMIC partners can reduce barriers to participation. Lessons learned, particularly around equity, sustainability, and harmonization, are directly applicable to future global CF research. Building on this model, the newly formalized Global CF Collaboration: Data & Research aims to strengthen LMIC partnerships, expand registry capacity, and ensure no region is left behind in advancing CF care and outcomes.