A new study has found that non-White infants with cystic fibrosis (CF) had a later age at first event (AFE) than white infants. The study also reported that at 1 year of age, AFE, Black race, premature birth, public insurance, and CF transmembrane conductance regulator (CFTR) variant classes I-III were associated with lower weight-for-age (WFA) z-scores.

“Marked disparities in health and mortality in people with cystic fibrosis are associated with race, ethnicity, and socioeconomic status (SES),” the authors wrote in the Journal of Cystic Fibrosis.

In the retrospective cohort study, the research team analyzed data on 6354 infants born between 2010 and 2018 who were enrolled in the Cystic Fibrosis Foundation Patient Registry. The primary outcome measure was AFE, and the secondary outcome was WFA z-score, which was averaged between 12 and 24 months of age.

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Infants were divided into 2 groups: Group 1 included those in the Black/African American, American Indian/Native Alaskan, Asian, and/or other race, and/or Hispanic ethnicity categories, and Group 2 included White infants who were not Hispanic. Subgroups were established for each individual ethnicity in Group 1. Additional demographic data that could affect health, such as SES and parental educational attainment, were also explored.

“Our objective for this study was to explore whether infants with CF who are demographically categorized as Black/African American, American Indian/Native Alaskan, Asian, and/or other race, and/or Hispanic ethnicity had a later age at first testing or clinical evaluation than white and not Hispanic infants and whether this would be associated with differences in growth,” they explained.

The results of the analysis revealed that infants categorized as any race other than white had a later AFE and poorer nutritional outcomes. Those infants with a lower WFA z-score were more likely to be Black and have public health insurance.

Given that newborn screening for CF is now broadly available, the authors recommend that quality improvement efforts are made to ensure infants in marginalized groups are assessed in a more timely manner so that treatment is not delayed.


McColley SA, Martiniano SL, Ren CL, et al. Disparities in first evaluation of infants with cystic fibrosis since implementation of newborn screening. J Cystic Fibros. Published online July 21, 2022. doi:10.1016/j.jcf.2022.07.010