Expanded effort will help standardize, improve care for hypertrophic cardiomyopathy

With additional support, American Heart Association initiative seeks to close gaps in diagnosis and advance care for the most common inherited heart disease, improving outcomes for patients nationwide

2025-11-17

(Press-News.org) DALLAS, Nov. 17, 2025 — Hypertrophic cardiomyopathy (HCM) is the most common inherited heart disease and impacts an estimated 1 in 500 people in the U.S., according to the American Heart Association, a relentless force changing the future of health for everyone everywhere. Because many cases go undetected and untreated until acute symptoms occur, the Association is scaling up its efforts to improve diagnosis and treatment of HCM.

HCM is a thickening of the lower main pumping chamber of the heart (the left ventricle). It 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. Despite its serious implications, care for HCM remains fragmented, with inconsistent standards and limited early detection.

To further address these gaps, the American Heart Association is expanding its existing initiative to improve HCM systems of care and standardize how people with HCM are identified, assessed, referred and treated. With new support from Cytokinetics, the program will grow to include:

an increased number of sites participating in a national HCM Registry powered by Get With The Guidelines®; broader certification opportunities for referring centers and personnel; introduction of patient support services at select HCM sites; and a prospective implementation pilot of the Association’s HCM detection algorithm. The new, matching support from Cytokinetics builds on a national effort designed to unify and elevate consistent standards of care for HCM patients financially supported by founding sponsor Bristol Myers Squibb.

“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 Anjali Owens, M.D., volunteer co-chair of the American Heart Association’s HCM initiative and director of the Center for Inherited Cardiovascular Disease at the University of Pennsylvania Perelman School of Medicine. “This initiative represents an essential step toward a unified approach to HCM care, ultimately aiming to improve patient outcomes, enhance quality of life and reduce the risks associated with the disease. Integrated commitment across the system of care is critical to success.”

“Our longstanding commitment to tackling cardiovascular diseases by discovering and developing innovative medical therapies compels us to support the American Heart Association on this important initiative to create a consistent standard of care for people with hypertrophic cardiomyopathy,” said Fady I. Malik, M.D., Ph.D., Cytokinetics’ executive vice president of research and development. “Because HCM can be complex to identify and treat, we are proud to support the initiative’s focus on advancing care and improving outcomes for those affected.”

To stay up to date on the latest science and evidence-based guidelines on HCM care, visit heart.org/HCMregistry.

The Association receives more than 85% of its revenue from sources other than corporations. These sources include contributions from individuals, foundations and estates, as well as investment earnings and revenue from the sale of our educational materials. Corporations (including pharmaceutical, device manufacturers and other companies) also make donations to the Association. The Association has strict policies to prevent any donations from influencing its science content and policy positions. Overall financial information is available here.

Additional Resources:

Hypertrophic Cardiomyopathy Roundtable Report AHA HCM Registry, Recognition, and Site Certification Initiative | AHAtv 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. Dedicated to ensuring equitable health in all communities, the organization has been a leading source of health information for more than one hundred years. Supported by more than 35 million volunteers globally, we fund groundbreaking research, advocate for the public’s health, and provide critical resources to save and improve lives affected by cardiovascular disease and stroke. By driving breakthroughs and implementing proven solutions in science, policy, and care, we work tirelessly to advance health and transform lives every day. Connect with us on heart.org, Facebook, X or by calling 1-800-AHA-USA1.   

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