Heart Metabolics announced today that its drug, Perhexiline, has moved into Phase 2b trials. The drug is intended for those patients with HCM and moderate to severe heart failure with preserved left ventricular function. Results of the Phase 2a study found the drug improved exercise capacity and quality of life in patients taking the drug.
To learn more about the staging of clinical drug trials and how they work, click here.
According to research presented at the 2016 European Society of Cardiology Congress today, sudden cardiac arrest from HCM, which has long been thought to result from exercise, is actually more likely to occur at rest, or even during sleep, according to Dr. Gherardo Finocchiaro, a cardiologist at St George’s University in London. Dr. Finocchiaro also pointed out that of the 184 HCM patients in his study, almost 80% had no previous symptoms of HCM, and only 1 in 5 had been diagnosed with HCM before their deaths. Interestingly, most of the sudden deaths from HCM analyzed in the study occurred in patients in their 30s and 40s.
Doctors at the University of Pennsylvania have created a new model which they say can predict the risk of sudden cardiac arrest in people without known heart disease. According to the article, published recently in Circulation, low levels of albumin, a protein commonly tested in routine blood panels, is a novel risk factor among the twelve factors identified. This article in Cardiac Rhythm News offers more details.
On August 11, 2016, I celebrated the ten year anniversary of the myectomy I had at Mayo Clinic in Rochester, MN. To commemorate the auspicious occasion, for the first time in many years, I wrote a blog entry on my old blog, Cynthia’s Summer Adventure. I created Cynthia’s Summer Adventure so that my friends and family could follow my progress during surgery and also, so that other HCM patients would have an opportunity to see what it was like to go through the myectomy process at Mayo Clinic.
This week I opened my mail, and between the many envelopes containing bills and the ever present promotional leaflets from local realtors, I found a large envelope from Mayo Clinic. This envelope contained a survey for me to fill out with a bunch of questions about my heart condition. All of the questions in the survey are specifically targeted at patients with Hypertrophic Cardiomyopathy. The survey asked me how I am feeling now, what medications I am currently taking and whether I have had other cardiac complications or procedures in the ten years following my myectomy surgery.
Ten years after I had my open heart surgery, I am so glad that I chose Mayo so that I am able to participate in and benefit from all of the meaningful research they are doing on the condition. This research will continue to benefit my descendants and relatives in the hope that some day, HCM will no longer be part of our lexicon.
Lisa Yu, founder of Children’s Cardiomyopathy Foundation, posted this article today on Huffington Post. This piece summarizes the efforts currently being made to screen Olympic athletes and elaborates on how better screening and response protocols might help to avoid tragedies.
An August 20, 2016 article in The Lancet points out that many physicians do not effectively screen for or properly treat Atrial Fibrillation. Furthermore, aspirin, which is often given as a treatment for A-fib, is insufficient to prevent stroke.
If A-Fib is detected, treatment with anti-coagulants is essential.
A recent study published in The New England Journal of Medicine concluded that individuals of African descent found to carry genes previously identified with HCM did not, in fact, have the disease. Thus, the article highlighted the importance of including diverse populations when sequencing genomes for genetic diseases so as to avoid false diagnoses.
The New York Times also picked up this story, focusing its article on the negative repercussions that can result from a false positive genetic test for HCM.
In connection with the findings, National Public Radio interviewed three people, including Dr. Isaac Kohane, one of the researchers who published the findings of the lack of diversity in the HCM genetic panel, as well as New York City HCM patient Tarika Mingo. Finally, NPR spoke to veteran HCM expert Dr. Barry Maron, who noted a potential concern that athletes may have been erroneously disqualified from sports participation solely on the basis of false positive genetic testing results.
During the Olympics we all gather around our television sets to watch the best athletes in the world compete against each other and we wonder how it is that they can humanly perform at such a high level?
This feature story about Stanford HCM Clinic’s Dr. Euan Ashley provides us with an interesting overview of the research Dr. Ashley is doing on high performance elite athletes with the hope that their genes may provide clues that will one day help to help treat those of us with HCM and other genetic heart conditions.
According to a recent study of HCM patients, more than half of the patients surveyed did not participate in adequate physical activity due to complaints of pain, injury and disability.
The takeaway from this study is that for those with HCM, physical activity should be encouraged to the extent possible for each patient.
For more on exercise, see the AHA Guidelines for exercise on the Hypertrophic Cardiomyopathy – HCM For Short page of this website and the HCM exercise program developed by Toronto’s Peter Munk Cardiac Centre listed at bottom of the Resources page of this website.
A recent retrospective study published in the Journal of Cardiovascular Electrophysiology found that atrial fibrillation (AF) occurred for the first time in 16 of 30 patients (53%) of patients with implantable devices being followed at the center conducting the study.
Of the patients experiencing AF for the first time, 14 of 16 (88%) of the patients were not aware of having experienced any clinical symptoms. As patients age, AF appears to be a common consequence of HCM. Patients may be caught unaware and unprepared, so monitoring is especially important.
HCM Beat 