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APCA has long cited statistics of cleft prevalence as 7,000 children born in the United States each year, or 1 in 600 births. Several agencies collect this type of data, most notably the National Birth Defects Prevention Network (NBDPN). ACPA’s preferred language for persons born with cleft and craniofacial conditions includes the term “birth difference.”
Even as global numbers vary in reported data, ACPA sought updated U.S.-specific data to provide a clearer understanding of U.S. prevalence. In 2023, data were compiled from reported state-specific departments of health for the years 2016-2020, and NBDPN published updated numbers in their birth defects reports. No other update had been provided since the release of 2014 data.
ACPA’s Board of Directors reviewed the data, along with supplemental reporting and manuscripts, and we now provide an update on U.S. prevalence— information that the U.S. Centers for Disease Control and Prevention now also corroborates.
“Data were collected from 13 US population-based surveillance programs that used active or a combination of active and passive case ascertainment methods to collect all birth outcomes. These data were used to calculate pooled prevalence estimates and national prevalence estimates adjusted for maternal race/ethnicity for all conditions, and maternal age for trisomies and gastroschisis. Prevalence was compared to previously published national estimates from 1999 to 2014.” (https://pmc.ncbi.nlm.nih.gov/articles/PMC10898112/)
Therefore, ACPA recommends that healthcare and patient-advocacy organizations adopt the following statement regarding cleft prevalence in the United States:
“Between 6,000 and 8,000 children are born yearly in the United States with a cleft lip and/or palate. In the United States, about 1 in 1,050 babies is born with cleft lip with or without cleft palate, and about 1 in 1,600 babies is born with cleft palate alone.”
