Risk calculator to preven sudden cardiac death

Researchers are developing an app to calculate the risk of life-threatening heart rhythm disorders.

Apparently healthy people who, for example during exercise, die due to a serious heart rhythm disorder: there is a chance that they have the hereditary heart disease ARVC. Researchers from UMC Utrecht and Johns Hopkins Hospital (US) have now developed a risk calculator. This makes it easy to calculate the individual risk of life-threatening cardiac arrhythmias in ARVC patients. Doctors can choose the best treatment together with a patient based on this. Use of the calculator can prevent one in three ICD implantations in ARVC patients, a burdensome procedure. An article about this risk calculator appeared in the European Heart Journal on Wednesday 27 March.

With the hereditary heart disease ARVC, arrhythmogenic right ventricular cardiomyopathy, life-threatening cardiac arrhythmias occur. The pumping function of the heart also slowly deteriorates. The predisposition to the disease is hereditary. One in a thousand people has this genetic predisposition. Thirty percent of them actually get ARVC. It is therefore one of the most common hereditary heart muscle diseases in the Netherlands. The condition affects men and women, mostly young and very sporty patients, with an average age of 35 years.

Together with fourteen hospitals in six European and North American countries, led by UMC Utrecht and the Johns Hopkins Hospital (Baltimore, USA), researchers have now developed a calculation model. Laurens Bosman (physician-researcher cardiology) and Anneline te Riele (cardiologist i.o.) played an important role in the development of the calculation model as principal investigators at UMC Utrecht. With this model, a risk calculator, the individual risk of a patient for life-threatening heart rhythm disorders can be determined. The risk calculator is based on data from 528 ARVC patients who have been diagnosed with DNA test for hereditary heart disease: the largest group of ARVC patients ever described.

The calculator calculates the risk of life-threatening arrhythmias based on seven characteristics: age, gender, a previous arrhythmia, a previous loss, the number of strokes of the heart in 24 hours, a deviant heart film and the pumping power of the right ventricle. The doctor can easily extract this data from the patient file. The risk calculator enables doctors to come to the best individual treatment in conversation with the patient. Using the risk calculator in ARVC patients, up to 32 percent of ICD implantations can also be prevented in people who do not appear to need such a device. This is also a major advance, as implantation is a burdensome procedure for the patient that is not without risks.

The calculator is available online as an app so that any doctor can use it. For this study, the UMC Utrecht, together with other Dutch UMCs, supplied the data of almost a third of the patients.
The research was supported by the Dutch Heart Foundation, The Netherlands Heart Institute and the Netherlands Organization for Scientific Research (NWO). Patients, doctors and researchers who want to know more about (participating in) scientific research into ARVC / ACM can visit the Dutch website www.acmregistry.nl.

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