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A risk prediction model for sudden cardiac death in hypertrophic cardiomyopathy patients

UCL research to develop a risk model to predict the chances of sudden cardiac death in people with HCM is helping clinicians and patients worldwide make better decisions about life-saving treatments.

Cardiomyopathy

12 April 2022

Hypertrophic cardiomyopathy (HCM) is an inherited heart disease that affects approximately 36 million people worldwide. Many individuals with the condition are at high risk of dying when their heart stops suddenly and require surgery to insert an implantable cardioverter defibrillator (ICD). 

The invasive ICD therapy significantly reduces sudden cardiac death (SCD) events and can return life expectancy to near normal. However, in 1 in 10 cases complications occur and for some HCM patients the risks of this invasive procedure may outweigh the benefits.  

A research team led by Professor Rumana Omar (UCL Department of Statistical Science) in collaboration with Professor Perry Elliott (UCL Institute of Cardiovascular Science) used statistical models to develop and evaluate a risk prediction model to identify which patients were at highest risk of SCD. 

The risk prediction tool accurately assesses individual’s risk of SCD in people with HCM, so those at high risk can be offered a life-saving ICD implant and minimise ICD implantation in patients with low risk of SCD. 

To develop the tool, an international cohort of 3,675 HCM patients from six European centres was established, through the HCM-RISK Consortium collaboration, which includes clinicians and health researchers from Europe, North America, Israel, and the Far East.  

The HCM Risk-SCD tool classifies patients into low, moderate, or severe risk groups based on their predicted probabilities of a SCD event. The algorithm has been incorporated into the European Society of Cardiology (ESG) guidelines, endorsed in 57 countries. It is currently used by cardiologists in at least 25 countries to risk-stratify HCM patients during their clinical assessment and decide on the best treatment option.  

To assess the model’s performance in clinical settings, it was tested on 3,703 patients from a geographically diverse cohort recruited from 14 centres across the US, Europe, the Middle East, and Asia. The tool was also independently validated in a wider patient group including HCM patients treated with a non-surgical procedure to treat obstruction.  

The risk calculator is freely available online and can be downloaded as an App.  

In a survey carried out by ESC, more than 695 cardiologists across 25 countries provided detail on how they use the risk tool in clinical practice. Three quarters of the respondents reported using the tool one to five times in a six-month period and eight out of ten said the tool has improved their clinical decision making.

An optimal management of ICD implantations in HCM patients balancing with their SCD risks can be achieved using this tool, potentially resulting in cost saving for the NHS.  

Research synopsis

A risk prediction model for sudden cardiac death in hypertrophic cardiomyopathy patients (HCM Risk-SCD) 

One in 500 people are at risk of sudden cardiac death (SCD) due to an inherited heart muscle disorder, hypertrophic cardiomyopathy (HCM). Research at UCL to develop a risk model to predict the chances of sudden cardiac death in people with HCM is helping clinicians and patients worldwide make better decisions about life-saving treatments. 

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