April 3, 2023 / Care,Research

The Heart Is a Muscle Too: PPMD Convenes 80+ Professionals for 2023 Cardiac Care Workshop

PPMD Convenes 80+ Professionals for 2023 Cardiac Care Workshop

Last week in New Orleans, PPMD held the 2023 Cardiac Care and Duchenne – Professionals Workshop, convening over 80 clinicians, researchers, and industry partners to continue to expand our knowledge around the heart and Duchenne. As part of PPMD’s Cardiac Initiative, we work with the ACTION-DMD network to improve care for people living with Duchenne, Becker, and female carriers.

Our Questions

Pat Furlong, PPMD Founding President & CEO opened the meeting with a series of questions, framing our priorities:

  • What do we know and what do we need to learn about Duchenne cardiomyopathy?
  • If treatments are targeted to protect skeletal muscle, such as gene therapy, is the heart “built to last”?
  • How early should cardiac medications be started?
  • When and how do we utilize other heart failure medications that are not typically prescribed by Duchenne cardiologists?
  • Are individuals with Duchenne, Becker, and female carriers likely to have arrhythmias?
  • How will we make sure hearts stay stronger with every beat?

Topics

Last year, PPMD held the 2022 Cardiac Care and Duchenne – Professionals Workshop, which explored what we know, what we need to learn, how we will know what works, and what are the best ways to preserve heart function (click here for a report of the meeting). This second workshop focused on cardiomyopathy was held last week to further our goal of improving care of the heart muscle, exploring topics such as:

  • Data
    Analysis of current protocols in cardiac care to include medicines, cardiac testing (Echo, cMRI), and devices, to understand the impact of these measures and identify gaps in knowledge.
  • Gene Therapy
    How should cardiologists evaluate and treat the heart following gene therapy?
  • Female Carriers
    Cardiac surveillance and care of female carriers is variable; how can and should we approach specialized care for carriers?
  • How and When should cardiologists consider using medicines such as Entresto or SGLT2 to treat cardiomyopathy?
    Are there other medications on the market that should be considered for Duchenne? How can we address Duchenne cardiac care on a global level?
  • Using Tech as Tools to evaluate heart health
    How best can we utilize devices, such as Apple watches, Zio patches, Loop recorders and/or the ActiMyo device to help us to study and learn more about the heart?
  • Decisions
    Decisions regarding cardiac interventions are difficult for families. As healthcare providers, how can we better understand the disparities in care and treatment?

Next Steps

PPMD’s goal is to protect and preserve heart function for every individual with Duchenne, Becker, and female carriers. We know we must advance new knowledge and plan to drive harmonization across cardiac care in the United States and abroad. As part of our critical Cardiac Initiative, we will continue to partner with the ACTION-DMD network to connect Duchenne cardiologists from around the world.

To learn more, join us at PPMD’s 2023 Annual Conference, June 29-July 1 in Dallas, Texas (or virtually!) where we will talk about the heart and so much more.

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