Prevalence of neuromyelitis optica spectrum disorder in the United States

Mult Scler. 2024 Jan 27:13524585231224683. doi: 10.1177/13524585231224683. Online ahead of print.


Background: Neuromyelitis optic spectrum disorder (NMOSD) is a rare demyelinating, autoimmune disease and the burden in United States is not well characterized.

Objective: The objective of this study was to determine the 2022 US prevalence of NMOSD.

Methods: We constructed a cross-sectional study using aggregated electronic health record data for 25.7 million patients who had a 2022 clinical encounter. The data originated from the TriNetX US Collaborative Network of 55 healthcare organizations that span all 50 states. NMOSD prevalence was determined by querying for age-interval, sex, and race combinations, with direct standardization to the 2022 US Census data.

Results: There were 1772 NMOSD patients among 25,743,039 patients for a prevalence of 6.88/100,000. Prevalence was the highest in Blacks (12.99/100,000) who represented 27.7% of NMOSD patients, then Asians (9.41/100,000and Whites (5.58/100,000). Among females, the prevalence of NMOSD was 9.48/100,000, and Black and Asian females had a 2.65- and 1.94-times higher prevalence than White females. In males, the prevalence of NMOSD was 3.52/100,000 and it did not differ by race. We observed a 3/5:1 female-to-male ratio in NMOSD. The age- and sex-adjusted 2022 estimate of persons with NMOSD in the United States was 15,413 females and 6233 males.

Conclusion: We estimate that there were near 22,000 Americans living with NMOSD in 2022.

Keywords: NMOSD; Neuromyelitis optica spectrum disorder; epidemiology; prevalence.