Parent Project Muscular Dystrophy Announces Pediatric Certified Duchenne Care Center at St. Louis Children's Hospital

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Parent Project Muscular Dystrophy (PPMD)

Jul 07, 2022, 10:46 ET

Leading Duchenne Organization Expands Certification of Clinics that Provide Optimal Care for People with Duchenne Muscular Dystrophy with 1st Clinic in St. Louis

WASHINGTON, July 7, 2022 /PRNewswire/ -- Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne muscular dystrophy (Duchenne), announced the expansion of their renowned Certified Duchenne Care Center Program (CDCCP) with the certification of the clinic at St. Louis Children's Hospital. This is an exciting step for the CDCCP as it continues to expand its reach to include St. Louis and the surrounding region.

Rachel Schrader, MS, APRN, CPNP-PC, PPMD's Vice President of Clinical Care and Education and Director of the CDCCP, notes the addition of Children's is an important step in bringing standardized Duchenne care to St. Louis. "The team at the Washington University Neuromuscular Clinic at Children's has grown tremendously over the last several years, and we are thrilled to include them in the CDCCP. The neuromuscular program's history at Washington University is long steeped in cutting-edge research and transformational Duchenne care, and we are delighted to extend certification to their team."

St. Louis Children's Hospital is the largest provider of Duchenne care in eastern Missouri and southern Illinois and serves a large population of nearly 250 patients living with "dystrophinopathy," the spectrum of muscle diseases that are caused by a change in the dystrophin gene. The center serves patients in need of both clinical care and those participating in research, as Children's is a large research hub in the region.

Led by its director, Dr. Craig Zaidman, a Washington University pediatric neurology specialist at St. Louis Children's Hospital, the clinic has grown to include multiple subspecialists including renowned experts in a variety of fields, as well as the addition of a nurse practitioner and nurse coordinator, who work collaboratively to ensure patient care is delivered in a coordinated, comprehensive manner in line with CDC's Duchenne Care Guidelines.

"Being the only pediatric certified Duchenne care center in the St. Louis area is a tribute to the group of professionals who work at our clinic each day," said Zaidman. "We're honored to provide the highest level of care to our patients and families."

PPMD's Certified Duchenne Care Center Program supports standardized, comprehensive care and services for all people living with Duchenne. Certification means centers 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 CDC's Care Considerations. As part of its ongoing mission to end Duchenne, PPMD continues to insist all people with Duchenne receive comprehensive care.

Schrader is thrilled to add St. Louis Children's to the growing network of Certified Duchenne Care Centers and to continue to expand the program to reach the large dystrophinopathy population currently under Dr. Zaidman's care. "PPMD and the CDCC Certification Committee were delighted to review the Children's clinic and were impressed with the growth and advancement that has taken place at their clinic over the last several years. Dr. Zaidman's passion for delivering excellent neuromuscular care is abundantly clear, and the team has a clear dedication to caring for people living with Duchenne and Becker. We look forward to partnering with them for many years to come," said Schrader.

To learn more about PPMD's Certified Duchenne Care Center Program, visit PPMD's website. Click here to learn more about the history of PPMD's Certified Duchenne Care Center Program and to access PPMD's first published article on the program.

ABOUT PARENT PROJECT MUSCULAR DYSTROPHY:

Duchenne is a fatal genetic disorder that slowly robs people of their muscle strength. Parent Project Muscular Dystrophy (PPMD) fights every single battle necessary to end Duchenne.

We demand optimal care standards and ensure every family has access to expert healthcare providers, cutting edge treatments, and a community of support. We invest deeply in treatments for this generation of Duchenne patients and in research that will benefit future generations. Our advocacy efforts have secured hundreds of millions of dollars in funding and won five FDA approvals.

Everything we do—and everything we have done since our founding in 1994—helps those with Duchenne live longer, stronger lives. We will not rest until we end Duchenne for every single person affected by the disease. Join our fight against Duchenne at EndDuchenne.org. Follow PPMD on Facebook, Twitter, Instagram, and YouTube.

ABOUT ST. LOUIS CHILDREN'S:

For more than 140 years, St. Louis Children's Hospital has provided exceptional care for children in all 50 states and 80 countries around the world. With its academic partner, Washington University School of Medicine, St. Louis Children's is consistently ranked among the nation's best pediatric hospitals by U.S. News & World Report. A member of BJC HealthCare, St. Louis Children's follows one simple mission – to do what's right for kids. That mission comes to life through medical discovery, innovative therapies and compassionate care. In 2018, St. Louis Children's expanded with a state-of-the-art, 12-story medical tower. St. Louis Children's relies on generous donations to deliver specialized care for families in need, extend health care services to the community, and pursue research that promises to transform pediatric medicine. To find out more, visit StLouisChildrens.org, Facebook Twitter and Instagram.

SOURCE Parent Project Muscular Dystrophy (PPMD)