With the launch of the new CONNECT-HCM Registry, the ACC aims to accelerate insights into hypertrophic cardiomyopathy (HCM) and expand equitable access to treatment. Sponsored by Bristol Myers Squibb and developed in collaboration with Atlantic Health, Arboretum, and the Yale Center for Outcomes Research & Evaluation (CORE), the new digital registry aims to increase understanding and improve care for what is one of the most common genetic cardiovascular diseases.

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 patients with HCM are cared for across medical providers, regardless of location. This research approach and platform has started with Morristown Medical Center, with expansion to additional sites expected as the registry grows.

"Because of the unique challenges in identifying HCM, data, treatment and diagnosis are predominantly from a single center experience with enrollment from limited providers," said Matthew W. Martinez, MD, FACC, CONNECT-HCM co-principal investigator and director of Sports Cardiology and the HCM Center at Atlantic Health. "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."

As part of the CONNECT-HCM registry, participants will receive ACC's CardioSmart patient educational materials, including a symptom tracker and exercise fact sheet to determine a safe and effective exercise plan. Mild to moderate exercise is recommended as part of the 2024 ACC/AHA HCM Guideline as a means of improving quality of life and maintaining the ability to perform everyday activities.

"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."

Clinical Topics: Heart Failure and Cardiomyopathies

Keywords: Cardiomyopathy, Hypertrophic, Hypertrophic Cardiomyopathy