The American College of Cardiology has established the Connect-HCM digital registry to broaden understanding of, improve access to care for, hypertrophic cardiomyopathy, one of the most common genetic cardiovascular diseases, according to an Aug. 19 news release.
Sponsored by Bristol Myers Squibb and developed in collaboration with Morristown, N.J.-based Atlantic Health System, Arboretum and Yale New Haven Hospital’s Center for Outcomes Research and Evaluation in New Haven, Conn., , the registry enables direct patient enrollment and links data with electronic health records through Arboretum’s Hugo Connect platform.
More than 70 participants have already enrolled. Researchers will track symptoms, imaging, treatments and outcomes to address gaps in real-world HCM data. The registry aims to expand nationwide beyond its initial site at Morristown (N.J.) Medical Center, according to the release.
Registry participants will receive CardioSmart.org educational tools, including exercise guidance consistent with the 2024 ACC/AHA HCM guideline, which recommends mild to moderate activity for patients.
