New effort to improve care for hidden heart disease

American Heart Association initiative aims to overcome gaps in care for hypertrophic cardiomyopathy, the most common inherited heart disease

2024-12-04

(Press-News.org) DALLAS, December 4, 2024 — An estimated 1 in 500 people in the U.S. are living with hypertrophic cardiomyopathy (HCM) — the most common inherited heart disease — and many are unaware.[1]

HCM is a thickening of the lower main pumping chamber of the heart (the left ventricle). The disease is often underdiagnosed and inconsistently managed, leading to delayed treatment, increased risk of complications and preventable death. Yet, systems of care for this disease are fragmented and varied.

To overcome these gaps in care, the American Heart Association, celebrating a century of lifesaving service in 2024, has launched a new three-year initiative to improve HCM systems of care and standardize how patients with HCM are identified, assessed, referred and treated.

The initiative, supported financially by Bristol Myers Squibb, includes development of:

a national HCM registry powered by Get With The Guidelines® to collect and analyze real-world data; a certification program to set standards of care for sites treating HCM patients; an HCM care recognition program for U.S. sites by piloting and validating data collection and HCM measurement with the registry to track adherence to evidence-based guidelines; and an HCM Learning Collaborative, engaging sites in activities such as model sharing and national education activities. HCM is a chronic disease that can get worse over time and lead to poorer quality of life and long-term complications, including atrial fibrillation, stroke and heart failure. Knowing the signs and symptoms of HCM is important. It can help with getting an early diagnosis to support better management of the disease.

“Hypertrophic cardiomyopathy can be an insidious disease, with some people having no obvious symptoms, while others may only feel symptoms with exercise or exertion,” said Andrew Wang, M.D., FAHA, American Heart Association volunteer, co-chair of the Association’s HCM Science Advisory Group and president of the Hypertrophic Cardiomyopathy Medical Society, a collaborator on the initiative. “This new effort is the most recent aspect of the American Heart Association’s 100-year history of improving treatment, outcomes and quality of life for patients while supporting health care professionals in providing timely, guideline-directed diagnosis and treatment.”

The new initiative will begin with 15 sites to pilot data collection and certification, with the goal of expanding to 60 sites. A volunteer American Heart Association Science Advisory Group will provide scientific expertise for development, maintenance and implementation of the registry, performance measures and recognition program.

“Building on our longstanding commitment to addressing the burden of cardiovascular disease, we are supporting the American Heart Association’s initiative aimed at establishing a unified approach to care for patients living with HCM,” said Cecilia Marta, vice president and head of U.S. Medical and Cardiovascular, Bristol Myers Squibb. “HCM can be a challenging disease to diagnose and manage, and we are dedicated to the goal of this initiative to improve outcomes for patients living with HCM.”

Learn more about this initiative at heart.org/HCMRegistry.

Additional Resources:

Spanish news release (to be added when available) AHA HCM Registry, Recognition, and Site Certification Initiative | AHAtv What is Hypertrophic Cardiomyopathy? (heart.org) Health Lesson: Know Your Family Health History ###

About the American Heart Association

The American Heart Association is a relentless force for a world of longer, healthier lives. We are dedicated to ensuring equitable health in all communities. Through collaboration with numerous organizations, and powered by millions of volunteers, we fund innovative research, advocate for the public’s health and share lifesaving resources. The Dallas-based organization has been a leading source of health information for a century. During 2024 - our Centennial year - we celebrate our rich 100-year history and accomplishments. As we forge ahead into our second century of bold discovery and impact our vision is to advance health and hope for everyone, everywhere. Connect with us on heart.org, Facebook, X or by calling 1-800-AHA-USA1.   

[1] Hypertrophic Cardiomyopathy Roundtable Report. American Heart Association. 2022. https://www.heart.org/-/media/Files/Health-Topics/Cardiomyopathy/HCM-Roundtable-Report.pdf.

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