Population Estimates of People with Spina Bifida in the United States in 2020

ABSTRACT Introduction Spina bifida is a birth defect that results in deficits of neurological function. Individuals diagnosed with spina bifida often require a lifetime of medical care to manage this condition. Currently, the number of people living with spina bifida in the United States is unclear. The purpose of this study is to provide estimates of the magnitude of this condition, and its distribution by gender and age. Methods Total births affected by spina bifida were calculated using rates from the Birth Defects Monitoring Program (BDMP) and state-based birth defects tracking systems supported by the Centers for Disease Control (CDC), over an 80-year period (1940-2020). Spina bifida mortality rates were determined using death certificate data available through the Centers for Disease Control and Prevention, National Center for Health Statistics. Life tables were created for each year of birth between 1940 and 2020 to estimate the total number of people with spina bifida alive in 2020 in the United States. Results In 2020, the estimated number of people in the U.S. living with spina bifida (0-80 years of age) was 124,150 (67,662 female; 56,488 male). The majority were adults aged 30 to 80 years (66.6%), compared to children and young adults (33.4%). Conclusion Understanding the approximate size and distribution by age and gender may assist health care providers in planning services for this changing population.