EARTH-HCM: A Real-World Tool to Visualize the Burden of Hypertrophic Cardiomyopathy in the United States
Key result
EARTH-HCM framework tracks US disease burden across ~431,000 patients with hypertrophic cardiomyopathy.
- n=431,457
Why the study?
There is limited evidence on the geographical distribution of hypertrophic cardiomyopathy disease burden and a lack of visualization of national data for patient outcomes among HCM patients.
Key Points
- To evaluate the feasibility of leveraging longitudinal claims data to estimate geographic disease burden and visualize clinical and economic outcomes in patients with hypertrophic cardiomyopathy.
- Retrospective, observational study utilizing longitudinal healthcare claims data from 2016 to 2023.
- Identified N=431,457 patients with a diagnosis of hypertrophic cardiomyopathy, defining the index date as the first recorded diagnosis.
- Among 431,457 diagnosed patients, 166,081 (38.5%) had obstructive hypertrophic cardiomyopathy and 265,376 (61.5%) had nonobstructive hypertrophic cardiomyopathy.
- Patients had a mean age of 60.1 (17.7) years, 51.1% were male, 53.4% were aged ≥65 years, and the median follow-up was 3.0 (2.4) years.
- Geographic distribution showed 36.3% of patients residing in the South, 24.8% in the Northeast, 24.3% in the Midwest, and 14.6% in the West.
Study Design
Type
Observational (n=431,457)
Multicenter
Yes
Structured PICO
P
Population
431,457 patients with a diagnosis of hypertrophic cardiomyopathy from US claims data (2016-2023), followed for a median of 3.0 years.
O
Outcome
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.
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Key expert perspectives
Captured external expert commentary on this paper, strongest first. Original sources are linked where available.
“Alongside advancements in the treatment landscape for HCM, diagnosis rates around the U.S. are increasing. Currently, most patients with HCM receive treatment at centers of excellence, however, these institutions are not easily accessible to all patients. A tool like EARTH-HCM can help both patients and healthcare providers understand current geographical disparities in the treatment of HCM as can hopefully lead to improved recognition, care and outcomes.”
“It affects people of different ethnicities and different cultures and different backgrounds in the same manner, but in the United States, there is a lot of heterogeneity in terms of the distribution of patients who are identified.”
“Until now, limited evidence has been available on the geographical distribution of HCM and its impact on patient outcomes. EARTH-HCM aims to advance research, uncover knowledge gaps, and investigate disparities in care, ultimately promoting more equitable access, not just for our company, but for the entire HCM community.”
Implication
The EARTH-HCM tool demonstrates the feasibility of leveraging national claims data to map the geographic distribution and healthcare 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.
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Cite This Study
Butzner et al. (2026) conducted an observational in Hypertrophic cardiomyopathy (HCM) (n=431,457). Hypertrophic cardiomyopathy diagnosis was evaluated on Geographic disease burden and feasibility of visualization framework. Analysis of US claims data identified 431,457 patients with HCM (38.5% obstructive, 61.5% non-obstructive), demonstrating the feasibility of the EARTH-HCM surveillance framework.