EARTH-HCM: A Real-World Tool to Visualize the Burden of Hypertrophic Cardiomyopathy in the United States

Abstract Background There is limited evidence on geographical distribution of hypertrophic cardiomyopathy (HCM) disease burden and a lack of visualization of national data for patient outcomes among patients with HCM. Objectives To evaluate the feasibility of leveraging claims data to identify patients with HCM, estimate geographic disease burden, and integrate clinical and economic outcomes within a scalable visualization framework capable of supporting hypothesis generation and future outcomes research. Methods EARTH-HCM will be an open access, education tool to visualize patient characteristics, treatments, clinical outcomes, healthcare resource utilization, and costs for patients with HCM. This is a retrospective, observational study of longitudinal claims data from 2016 to 2023, with the first HCM diagnosis being considered the index date. Results Among 431,457 patients with a diagnosis for HCM, 166,081 (38.5%) patients had oHCM and 265,376 (61.5%) had nHCM. Among HCM patients, 51.1% were male with a mean age of 60.1 (17.7) years and median follow-up of 3.0 (2.4) years. Most patients were in age groups of 65+ (53.4%) and 55-64 (20.5%) and resided in the South (36.3%), followed by the Northeast (24.8%), Midwest (24.3%), and West (14.6%). Conclusions EARTH-HCM demonstrates the feasibility of a national real-world surveillance framework to visualize the geographic distribution and healthcare burden of HCM and support future clinical and economic outcomes research.