Are you a HCM patient that is interested in sharing your insights on new patient education resources?
The American Heart Association is recruiting patients to participant in several focus groups sessions that are underway now. If you are interested, please complete this brief pre-screening survey and AHA staff will follow up with you if you are eligible to participate.
AHA is offering gift cards for those who participate in these focus groups.
The highly anticipated 2020 American Heart Association/American College of Cardiology Guidelines for the Diagnosis and Treatment of Patients with Hypertrophic Cardiomyopathy have been released.
This document, drafted with reference to published HCM literature, and with input from a committee of HCM experts with broad expertise, updates the prior version published in 2011. It contains clinical practice guidelines for the broad spectrum of issues which may confront medical professionals as they approach the diagnosis and treatment of patients and families affected by hypertrophic cardiomyopathy.
Continue reading “2020 AHA/ACC HCM Diagnosis & Treatment Guidelines Released”
In November at the American Heart Association’s Scientific Sessions held in Philadelphia, AHA announced that it would be starting a three-year initiative focused on hypertrophic cardiomyopathy, also known as HCM. The initiative is sponsored by MyoKardia, a San Francisco based company that is currently in clinical trials for mavacamten, the first drug specifically intended to treat HCM.
Last week, Cynthia Waldman of HCMBeat had the opportunity to speak with Amy Schmitz, AHA’s National Corporate Relations Director and Alexson Calahan, a Communication Manager for AHA.
What follows is a summary of their conversation about the forthcoming HCM initiative that has been edited for clarity.
Continue reading “AHA Seeking Patient Input for New HCM Initiative”
A recent study published in the American Journal of Cardiology found that the standards propounded by the American College of Cardiology Foundation with the American Heart Association (ACC/AHA) were superior in predicting which patients would benefit from an implantable cardiac defibrillator (ICD) compared to the calculator set forth by the European Society of Cardiology (ESC). According to the study, the use of the ESC tool will result in more high-risk patients going unprotected against sudden death.
Specifically, the study found that out of a group of 288 HCM patients, 14 who experienced aborted sudden cardiac arrest (or 43%) would not have qualified for an ICD under the ESC risk model compared to 7% of patients under the ACC/AHA guidelines.
The ACC/AHA guidelines are:
A companion editorial by Dr. Andreas S. Barth pointed out the shortcomings of both models, and reaffirmed the necessity for shared decision making between physicians and patients. Dr. Barth also expressed hope that a more accurate predictive model will evolve, though he acknowledged the impossibility of designing a model which could predict future events with certainty.
**Because so much HCM information was presented at the Summit, this is the second of multiple blog entries. Stay tuned to HCMBeat for more highlights from the HCM Summit. To see Part I of this series of highlights from the HCM Summit VI, click here.**
The 6th International HCM Summit was held October 27, 28 and 29th in Boston, Massachusetts. This symposium brings together HCM professionals from around the world who are there to learn about and discuss the latest developments in the treatment of HCM.
The symposium was organized by long time HCM expert Dr. Barry Maron and his son, Dr. Martin Maron. Both Marons are now affiliated with Tufts Medical Center’s Hypertrophic Cardiomyopathy Center.
What follows are summaries from selected talks presented at the meeting. The presenter and their hospital affiliation are noted below, along with the topic of their presentation. When possible, you may access the presenters’ slides via hyperlink by clicking on the name. (Note that not all presenters made their slides available).
Continue reading “HIGHLIGHTS FROM THE INTERNATIONAL HCM SUMMIT VI, PART II”
This article, published in this week’s Women’s Health magazine, features the former ballerina and beauty queen turned vocal patient activist. These days, Lindsay has focused her efforts on saving lives from sudden cardiac arrest. Lindsay’s efforts in the state of Ohio have resulted in proposed legislation to identify student athletes at risk of sudden cardiac arrest, while her partnership with the American Heart Association is steadily making CPR and AED training a graduation requirement in high schools across the nation.
Watch for more life-saving advocacy from Lindsay in the future. She is clearly much more than another pretty face!
Updated to include a video of Lindsay discussing her implantation with a S-ICD device.