Parent Project Muscular Dystrophy (PPMD) has partnered with the National Heart, Lung, and Blood Institute (NHLBI) to convene a working group titled “Contemporary Cardiac Issues in Duchenne Muscular Dystrophy.” The group, made up of top pediatric and adult cardiologists as well as clinical researchers, will meet July 10-11, 2014 in Bethesda, Maryland to address critical evidence gaps in the understanding of cardiac issues in Duchenne.
For the last several years, PPMD has been dedicated to cardiac issues in Duchenne, launching a Cardiac Initiative in 2011.
Heart issues don't just affect some people with Duchenne; they affect all people with Duchenne. While advances in respiratory care have improved respiratory outcomes, dilated cardiomyopathy and heart failure remain the leading cause of death in Duchenne. The goal of this first Cardiac Working Group is to identify knowledge gaps in our understanding of the natural history, diagnosis, and treatment of Duchenne-associated cardiac disease and develop a research agenda to address these gaps. We are thrilled to be collaborating with NHLBI and look forward to reporting back to the community after this week’s meeting.
-- PPMD’s Vice President of Clinical Care, Kathi Kinnett, MSN, CNP
The first meeting of the Cardiac Working Group will be structured around four topics and key questions within each topic:
1) Natural History
2) Diagnosis and Monitoring
3) Medical Therapy
4) Non-Medical Therapies
The meeting will conclude with a detailed outline of next steps, recommendations, and a summary of the meeting to be published.
Funding for this meeting has been provided, in part, by John Owens Adventure, Inc., a nonprofit that funds awareness for chronic childhood illnesses, including Duchenne.
To learn more about PPMD’s Cardiac Initiative and other cardiac care issues in Duchenne, visit PPMD’s website.