A recent study published in the European Heart Journal using data collected from the SHaRe Registry found that while childhood onset HCM (15% of all HCM) is far less common than adult onset HCM, it is often more serious.
Children with HCM are more likely to have sarcomere mutations, have a higher risk of ventricular arrhythmias, and are twice as likely as adults to require advanced interventions like ventricular assist devices, heart transplant or other advanced heart failure therapies.
A recent retrospective study by researchers using data from the SHaRe Registry found that women with hypertrophic cardiomyopathy have an increased risk of death and/or severe heart failure symptoms when compared to their male counterparts. This study also found that women tended to be older when diagnosed with HCM than men.
This study echoes a 2017 study from Mayo Clinic with similar findings.
Editor’s Note: It is clear that serious research into gender differences in HCM is needed. And, it is vitally important that women with HCM be persistent and diligent in obtaining expert care for their HCM. Their lives depend on it!
Researchers from the Sarcomere Human Cardiomyopathy Registry (or the acronym “SHaRe” for short) have again joined forces to look at a subset of hypertrophic cardiomyopathy (HCM) patients who have what is known as “end stage” HCM. This term, which is a bit of a misnomer, is used to describe patients who experience left ventricular systolic dysfunction (LVSD) which occurs when the left ventricular ejection fraction (LVEF) is less than 50%.
According to the study published last week in the journal Circulation, of a total of 6,793 HCM patients included in the study, 553 or 8% fell into this category. The paper goes on to highlight some important observations about patients that fall into this category which are highlighted below.
Continue reading “Share Registry Study Focuses on So-Called “End Stage” HCM”
This week, researchers from the eight HCM centers comprising the Sarcomeric Human Cardiomyopathy Registry [SHARE Registry] published a paper that every HCM patient should take to heart.
The sobering findings are that overweight HCM patients have a higher incidence of obstruction, heart failure and atrial fibrillation than their normal weight counterparts. As a result of this study, the researchers suggest heightened attention to weight management and exercise in order to prevent disease-related progression and complications.
This study examined patients from eight high volume HCM centers which aggregated their institutional data into a database known as the Sarcomere Human Cardiomyopathy Registry (or the acronym the “SHaRe” for short). The results of the study showed that, in general, HCM patients are at substantially elevated risk for atrial fibrillation and heart failure, and have significantly higher mortality rates than that of the general U.S. population.
Continue reading “HCM Researchers Put their Heads Together to Improve Lives of HCM Patients”
A recent study published by members of the SHaRe Cardiomyopathy Registry found that genetic test results for HCM are more definitive and helpful to patients when testing has been carried out at a high volume HCM center – especially a center that shares genetic data with other HCM centers.
Continue reading “Greater Certainty in Genetic Testing Results at HCM Specialty Centers”
It’s strange to think that a chaotic arrhythmia in the heart might actually appear to be a seizure caused by something that has gone haywire in the brain, but with sudden cardiac arrest (SCA) this can sometimes happen.
This is the true story of what happened to my daughter.
Continue reading “Guest Blogger – When a Seizure is not a Seizure – by Wendy Borsari”
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