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HACKENSACK, NJ, April 6, 2021 / PRNewswire / – Parent Project Muscular Dystrophy (PPMD), a non-profit organization leading the fight to end Duchenne muscular dystrophy (Duchenne) is pleased to announce awards to three collaborative projects of the Certified Duchenne Care Center network (CDCC). $ 450,000. As part of the organization’s 2021 CDCC Interagency Collaboration Grants program, these grants will support the work of twenty centers across the country working together to address a universal need for quality improvement or care that may be needed. enhanced by collaborative orientation and training.
Applicants were invited to apply earlier in the year, the PPMD has committed to support a grant for each of the areas of care to address areas (1) of diagnosis, early intervention and community education, (2) Duchenne transitional or adult care, and (3) Duchenne pediatric care. Beneficiaries were informed in March 2021 the selection of their proposals, with funding from April 2021. The projects will last two years.
Addressing the issues of early diagnosis and intervention, Dr. Anne Connolly, Head of the Division of Neurology at Nationwide Children’s Hospital, Professor of Pediatrics at Ohio State University College of Medicine, and member of the Gene Therapy Center at the Abigail Wexner Research Institute, will advance long-standing work on the 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 Duchenne certified care centers: Lurie children Hospital, Children’s Medical Center 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, received funding for her project in the Duchenne Adult Care and Transition Awards category, which will develop focused educational tools on the patient and the family. to help visualize the trajectory of care, improve patient capacity to act and adherence to medical recommendations, and improve quality of life and future planning for patients and caregivers. Her project will be carried out 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.
In the Duchenne general care category, Dr. Villa Chet and the ACTION network received funding for the shared decision making and cardiac care outcomes survey in Duchenne. The ACTION network harnesses the power of more than 50 centers across United States, 18 of which are Duchenne Care Centers certified. Dr Villa is a cardiologist at the Heart Institute of the Cincinnati Children’s Hospital Medical Center.
The beneficiaries will have to present intermediate and final analyzes during the biannual summits of the health professionals of Duchenne of the PPMD in 2022 and 2024 to ensure the dissemination of learning and the advancement of Duchenne care throughout the network of certified care centers. Duchenne and beyond. In addition, beneficiaries will need to publish their findings in a peer-reviewed journal to expand the scope of their learning and its subsequent impact on Duchenne’s care.
PPMD’s Vice President of Clinical Care and Education, Rachel Schrader MS, APRN, CPNP-PC, shares her perspective on funding this type of collaborative work: “We are happy 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 do a great job. Each of these important projects will fill a gap in care and advance the way we think about Duchenne care in this new era of technology, shared decision-making and how we provide early interventions to optimize long-term outcomes. term. We look forward to seeing the work accomplished by these projects and their passionate principal investigators and partner institutions. “
PPMD’s Certified Duchenne Care Center Program supports standardized and comprehensive care and services for all people living with Duchenne. Certification is granted to centers that maintain the highest standards of clinical and subspecialty services, quickly apply new evidence-based knowledge, minimize heterogeneity in clinical research results, and adhere to the standards of clinical care set by the United States Centers for Disease Control. and considerations of preventive care. 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 Duchenne Certified Care Center program, visit the PPMD website.
About Muscular Dystrophy Parent Project
Duchenne is a fatal genetic disease that slowly robs people of their muscle strength. Parent Project Muscular Dystrophy (PPMD) fights every battle it takes to end Duchenne.
We demand the highest standards of care and make sure every family has access to expert healthcare providers, state-of-the-art treatment and a supportive community. We are investing deeply in treatments for this generation of Duchenne patients and in research that will benefit future generations. Our advocacy efforts have garnered hundreds of millions of dollars in funding and won five FDA approvals.
Everything we do – and everything we’ve done since our founding in 1994 – helps people with Duchenne live longer and stronger lives. We will not rest until the end of Duchenne for each person affected by the disease. Join our fight against Duchenne on EndDuchenne.org. Follow PPMD on Facebook, Twitter, Instagram and YouTube.
SOURCE Parent Project Muscular Dystrophy (PPMD)
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