The American College of Cardiology has established a digital hypertrophic cardiomyopathy (HCM) registry to learn more about one of the most common genetic cardiovascular diseases and provide more equitable access to treatment and care. The CONNECT-HCM Registry is sponsored by Bristol Myers Squibb and developed in collaboration with Atlantic Health, Arboretum and Yale Center for Outcomes Research & Evaluation (CORE).
Because of the unique challenges in identifying HCM, data, treatment and diagnosis are predominantly from a single center experience with enrollment from limited providers. With this registry we’ll be able to proactively capture data that allows for direct patient enrollment regardless of the provider and allow for a broader understanding of HCM diagnosis, guideline-directed care, and outcomes in mainstream HCM care. We will be able to expand this format to sites throughout the country for patients who wish to enroll themselves into this registry.”
Matthew W. Martinez, MD, FACC, CONNECT-HCM co-principal investigator and director of Sports Cardiology and the HCM Center at Atlantic Health
HCM is a condition where the heart muscle gets too thick, making it harder for the heart to pump blood. It’s the most common genetic cardiovascular condition, but it is difficult to diagnose because many people don’t have symptoms or their symptoms are mistaken for other conditions. Left undiagnosed, HCM can lead to heart failure, blood clots, arrhythmias and sudden cardiac death.
To date, CONNECT-HCM has enrolled over 70 people with HCM who will be followed longitudinally to capture data on their symptoms, diagnostic images, treatment plans, outcomes and demographic information. By linking CONNECT-HCM registry data with individual electronic health records through Arboretum’s Hugo Connect platform, researchers will be able to study how individuals with HCM are cared for across medical providers regardless of location. The research approach and platform has started with Morristown Medical Center with anticipated expansion to additional sites rapidly.
“Registry participants are providing essential data on HCM symptoms, impact of treatments on different patient populations and outcomes that we are currently lacking,” said Rohan Khera, MD, MS, FACC, CONNECT-HCM co-principal investigator and an assistant professor of medicine at Yale School of Medicine. “In the future we’ll be much better equipped to diagnose and manage this complex but treatable condition because of the CONNECT-HCM registry.”
Participants will also receive CardioSmart.org educational materials, including a symptom tracker and exercise fact sheet to determine a safe and effective exercise plan. In the past, some HCM patients have feared exercise, but recent data has shown that exercise is beneficial to people with HCM and is very rarely a cause of sudden cardiac death. The 2024 ACC/AHA HCM Guideline recommends mild to moderate exercise for people with HCM to improve quality of life and ability to do everyday activities.
Source:
American College of Cardiology