Multicentre Hypertrophic Cardiomyopathy Registry
Research type
Research Study
Full title
Multicentre Hypertrophic Cardiomyopathy Registry
IRAS ID
363346
Contact name
Andrew Crean
Contact email
Sponsor organisation
University of Manchester
Duration of Study in the UK
5 years, 0 months, 1 days
Research summary
Hypertrophic Cardiomyopathy (HCM) is the most common inherited heart condition, affecting around 1 in 500 people. It causes the heart muscle to thicken, which can lead to blockages in blood flow (otherwise known left ventricular outflow tract obstruction, or LVOTO), breathlessness, and can put patients at risk for serious issues like heart failure and sudden cardiac death.
Although standard medications exist, and newer, more targeted therapies (such as cardiac myosin inhibitors) have recently been approved, doctors currently lack clear, comprehensive data to predict which treatment will work best for each individual patient. This challenge is compounded by limited understanding of how genetic differences and specific markers found in the blood or on heart scans affect long-term outcomes.
We, therefore, propose an observational, research study, that will collect essential clinical information from HCM patients above the age of 18 years old, at multiple NHS hospital sites across the UK over many years. By securely gathering real-world data including symptoms, blood and heart scan results, and response to medication, this study aims to fill these knowledge gaps. This study is anticipated to run over the course of 5 years.
The core objective is to improve understanding of the disease, refine risk prediction for serious complications, document best management practices across the UK, and pave the way for personalised treatment plans for HCM patients in the future.
REC name
London - Camberwell St Giles Research Ethics Committee
REC reference
25/PR/1688
Date of REC Opinion
6 Jan 2026
REC opinion
Further Information Favourable Opinion