The American College of Cardiology recently launched 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.
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.
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).
CONNECT-HCM Co-principal Investigator Matthew Martinez of Atlantic Health explained this process.
“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,” he said. “We will be able to expand this format to sites throughout the country for patients who wish to enroll themselves into this registry.”
To date, CONNECT-HCM has enrolled over 70 people with HCM who will be followed
to capture data on their symptoms, diagnostic images, treatment plans, outcomes and demographic information.
By linking 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 started with Morristown Medical Center with anticipated expansion to additional sites rapidly.
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.
