Collaboration of Hypertrophic Cardiomyopathy Association & American Heart Association Expands Patient Support & Care

This new project allows the expansion of the existing service model and measures patient-reported outcomes using quantitative research.

DENVILLE, NJ, UNITED STATES, July 29, 2026 /EINPresswire.com/ -- The Hypertrophic Cardiomyopathy Association (HCMA) and the American Heart Association have entered into a collaborative research relationship. For more than 30 years, the HCMA has provided patients and families with education, support, intake services, and personalized navigation assistance. This new project will allow HCMA and the American Heart Association to expand the existing service model and formally measure patient-reported outcomes using quantitative research methods.

At the end of two years, 400 patients and families will have completed the intake and navigation process under this research project across 4 HCMA Recognized Center of Excellence sites. The research will assess changes in patient-reported outcomes, including quality of life, confidence, and self-management skills.

The expanded navigation offering is also expected to benefit the broader HCMA community. HCMA will leverage new and existing tools from the American Heart Association and HCMA to find more effective ways to help patients navigate the complex systems surrounding their HCM lives.

“Our client services team is excited to welcome these dedicated families. We are grateful for their participation in this project, which will help us determine where we are succeeding and identify the areas that still need attention,” said Lisa Salberg, HCMA CEO and Founder.

The program will provide HCM patients with personalized navigation support including HCM education to understand their disease and treatment options; emotional and psychological support to encourage patients, reduce stress, and facilitate shared decision making; addressing social health drivers with access; activation and self-management to strengthen confidence and self-efficacy; and address clinical and administrative issues to enable patients to work with their care team, coordinate services, and navigate the everchanging insurance landscape.

Ultimately, this collaboration will translate data into action by establishing an improved, evidence-based standard for patient navigation.


About the Hypertrophic Cardiomyopathy Association (HCMA)
The Hypertrophic Cardiomyopathy Association, HCMA, was founded in 1996 as an international resource for patients, families, and the medical community on matters of importance. HCM is a genetic heart muscle disorder affecting 1 in 250 people worldwide. The HCMA provides services to enhance understanding, provide support, foster research, ensure high-quality health care, and support public policies of importance. The HCMA is a 501(c)(3) with offices in Denville, NJ, and an online presence at www.4hcm.org.

About Hypertrophic Cardiomyopathy (HCM)
HCM is a genetic heart disease that affects between 1 in 200 and 1 in 500 individuals. In HCM, the heart muscle thickens and becomes stiff, resulting in the heart having to work harder and having difficulty pumping oxygen-rich blood throughout the rest of the body. HCM can affect anyone, regardless of age, gender, or ethnicity.

Claudine D'Angelo-Dotzman
Hypertrophic Cardiomyopathy Association
+1 973-983-7429
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