Why the study?
Contemporary prevalence data for hypertrophic cardiomyopathy in the United States are limited, and epidemiological information stratified by disease characteristics and demographics is lacking.
The contemporary prevalence of hypertrophic cardiomyopathy in the US is approximately 1 in 327 individuals, which is higher than previously cited historical estimates of 1:500, predominantly driven by an increase in cases of nonobstructive HCM in patients over 65.
BACKGROUND: Data on the contemporary prevalence of hypertrophic cardiomyopathy (HCM) in the United States are limited, and information on the epidemiology by disease characteristics and patient demographics is lacking. OBJECTIVES: This study aimed to estimate the prevalence and incidence of HCM in the United States from 2016 to 2023 overall and stratified by patient subgroups. METHODS: In this observational study, patient-level administrative claims from 2016 to 2023 were collected from the Symphony Integrated Dataverse. Selected patients were those with ≥1 HCM diagnosis code during the study period. Patients were designated as having nonobstructive HCM (nHCM), obstructive HCM (oHCM), and symptomatic HCM using diagnosis codes. RESULTS: During the period of 2016-2023, there were 431,457 HCM cases in the total population of 141,003,247 patients for a prevalence rate of 1/327 individuals (95% CI: 1/326-328). The incidence of HCM was 50/100,000 (95% CI: 50-51/100,000) in 2017 and was 56/100,000 (95% CI: 56-57/100,000) in 2023. The rates in nHCM and oHCM were 188/100,000 (95% CI: 187-189/100,000) and 117/100,000 (95% CI: 117-118/100,000), respectively. Similarly, the incidence in asymptomatic and symptomatic HCM was 171/100,000 (95% CI: 171-172/100,000) and 135/100,000 (95% CI: 134-135/100,000), respectively. Prevalence generally increased with age and was higher in males than in females (341/100,000 [95% CI: 339-342/100,000] vs 277/100,000 [95% CI: 275-278/100,000], respectively). The regions and locations of individual states with the highest HCM, oHCM, and nHCM rates were in the Northeast and Midwest. CONCLUSIONS: In this administrative claims-based study, the prevalence of HCM from 2016 to 2023 was 1/327 individuals, which translates to an estimated 832,956 HCM cases in the United States.
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Butzner et al. (2026) studied this question.
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