Parent Project Muscular Dystrophy (PPMD) is pleased to announce awards to three collaborative Certified Duchenne Care Center (CDCC) network projects totaling $450,000. Under PPMD’s 2021 CDCC Inter-Institutional Collaboration Grant Program, these grants will support the work of twenty centers from across the country working together to address a universal quality improvement or care need that can be advanced by collaborative guidance and training.
Applicants were invited to apply earlier in the year, with PPMD committed to supporting one grant for each of the care domains to address the areas of:
- Diagnosis, early intervention and community education
- Transitional or adult Duchenne care
- Pediatric Duchenne care
Grantees were notified in March 2021 of their proposals’ selection, with funding to begin in April 2021. Projects will run for two years.
- Addressing issues pertaining to early diagnosis and intervention, Dr. Anne Connolly, Chief of the Division of Neurology at Nationwide Children’s Hospital, professor of Pediatrics at The Ohio State University College of Medicine, and member of the Center for Gene Therapy in the Abigail Wexner Research Institute, will advance longstanding work on use of corticosteroids in young patients with Duchenne. Her work will also assess early speech and cognition in this population. The project will include three other Certified Duchenne Care Centers: Lurie Children’s Hospital, Children’s Medical Center of Dallas at University of Texas Southwestern, and Cincinnati Children’s Hospital Medical Center.
- Dr. Rachel Thienprayoon, Medical Director of StarShine Hospice and Palliative Care and attending physician at Cincinnati Children’s Hospital Medical Center, was awarded funding for her project in the transitional and adult Duchenne care award category, which will develop patient- and family-centered educational tools to help visualize care trajectory, improve patient agency and adherence with medical recommendations, and improve quality of life and future planning for patients and caregivers. Her project will take place in partnership with the Ohio Pediatric Palliative and End-of-Life Care Network (OPPEN), which includes Nationwide Children’s Hospital and Akron Children’s Hospital, both Certified Duchenne Care Centers.
- Within the general Duchenne care category, Dr. Chet Villa and the ACTION Network were awarded funds for the investigation into shared decision making and outcomes in Duchenne cardiac care. The ACTION network leverages the power of more than 50 centers throughout the United States, 18 of which are Certified Duchenne Care Centers. Dr. Villa is an attending cardiologist at The Heart Institute at Cincinnati Children’s Hospital Medical Center.
Grantees will be expected to present both interim and final analyses at PPMD’s bi-annual Duchenne Healthcare Professionals Summits in 2022 and 2024 to ensure disseminated learnings and advancement of Duchenne care throughout the Certified Duchenne Care Center network and beyond. In addition, grantees will be expected to publish their findings in a peer-reviewed journal to extend the reach of their learnings and subsequent impact on Duchenne care.
PPMD’s Vice President of Clinical Care and Education, Rachel Schrader MS, APRN, CPNP-PC, shares her perspective on funding this kind of collaborative work:
“We are pleased to be able to fund our Certified Centers in this unique way to not only promote collaboration between institutions, but leverage the powerful connection within the Duchenne community to accomplish great work. Each of these important projects will address a gap in care and drive forward how we think about Duchenne care in this new age of technology, shared decision making, and how we provide early interventions to optimize long-term outcomes. We can’t wait to see the work accomplished by these projects and their passionate Principal Investigators and partnering institutions.”
PPMD’s Certified Duchenne Care Center Program supports standardized, comprehensive care and services for all people living with Duchenne. Certification is granted to centers that maintain the highest standards in clinical and sub-specialty services, rapidly apply new evidence-based knowledge, minimize heterogeneity in clinical research outcomes, and comply with standards in clinical care that were established by the US Centers for Disease Control and Prevention’s Care Considerations. As part of its ongoing mission to end Duchenne, PPMD continues to insist that all people with Duchenne receive comprehensive care.
To learn more about PPMD’s Certified Duchenne Care Center Program, visit PPMD’s website.