Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne muscular dystrophy (Duchenne), announces the expansion of its 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.
[Source(s): Parent Project Muscular Dystrophy, PR Newswire]
