UK National Registry for Adults with Hypertrophic Cardiomyopathy Collecting Long-Term Health Data to Improve Treatment and Understanding

What this Trial Is About

Hypertrophic cardiomyopathy HCM is a common inherited heart condition that causes thickening of the heart muscle, leading to potential blood flow blockages, shortness of breath, and risks of heart failure or sudden cardiac arrest. Researchers are collecting detailed health information from HCM patients across multiple NHS hospital sites in the UK to better understand the disease and how different treatments work for individuals. This observational registry aims to improve risk prediction and support more personalized treatment plans for people living with HCM. The study involves enrolling about 2,500 adults diagnosed with HCM over five years. Participants routine clinical data will be collected during their regular medical visits, including heart scans echocardiograms and MRI, blood tests, genetic information, medications, and device status if applicable. All care decisions remain with the treating doctors, and participants data are securely stored with unique study IDs to protect their identity. Participants will be involved over several years with ongoing data collection during their usual clinical appointments. Researchers will monitor changes in key heart function measures, the occurrence of significant heart rhythm problems, and relationships between genetics, imaging results, and clinical outcomes. The studys primary outcome focuses on changes in left ventricular outflow tract gradient over 3 to 5 years, helping to advance knowledge about HCM progression and treatment responses.

Multicentre Hypertrophic Cardiomyopathy Registry