We all know that the heart is a muscle too! Most people and parents living with Duchenne feel that care for the heart, as defined by the Care Considerations, is not as current or as aggressive as they would like. In 2009, when the Care Considerations were published, cardiac care was very different – no one had actually looked at fibrosis within the heart muscle, few patients were seeing a cardiologist, let alone getting ECGs, echocardiograms or MRIs, and the use of cardiac medication was a novel thought. Since that time, much of cardiac care has changed. The use of cardiac medications; such as ACE inhibitors, angiotensin receptor blockers and beta-blockers; are routinely discussed; several people with Duchenne have received heart transplants and left ventricular assist devices (LVADs); and other devices, such as implantable cardioverter defibrillators (ICDs) are entering the landscape.
Even with all of these changes, there are many unanswered questions and we have a long way to go to reduce discrepancies in cardiac care across the country. People living with Duchenne, and their parents, have expressed the need for the Care Considerations to be updated, in order to reflect new knowledge, opinions, and practices. They have also said that research directed toward improved knowledge and care related to cardiomyopathy (heart muscle disease) is their primary concern. In keeping with community concerns, PPMD and the National Heart, Lung, and Blood Institute (NHLBI), part of the National Institutes of Health (NIH), are happy to announce that they have joined together to develop a Cardiac Working Group to begin to explore these issues.
The first meeting of the Cardiac Working Group, “Contemporary Cardiac Issues in Duchenne Muscular Dystrophy,” will be held July 10-11, 2014. Dr. Elizabeth McNally (University of Chicago) and Dr. Larry Markham (Vanderbilt University), both of whom have expertise in cardiology and Duchenne, will lead the Cardiac Working Group. The Working Group will be small (20 members) and will consist of cardiologists from across the United States who are experts in care and/or research, along with at least one FDA representative.
The first meeting of the Cardiac Working Group will be structured around four topics and key questions within each topic:
By asking key questions within each topic, the Working Group hopes to identify current knowledge and identify gaps in cardiac knowledge and research. We also hope that evidence presented during this first meeting might help the CDC’s current effort to update the Cardiology section of the Care Considerations.
PPMD is thrilled to have developed this collaboration with NHLBI. We hope that this is just the beginning of systematic efforts to improve cardiac knowledge, care and research.