At the heart of Riley Children’s Health is a pediatric ecosystem, but even more, it’s home to a Certified Duchenne Care Center (CDCC).
As recognized by the Parent Project Muscular Dystrophy (PPMD), the acclaimed program provides optimal care for patients living with Duchenne muscular dystrophy, a fatal disorder decreasing muscular strength, and additionally, it is Indiana’s first clinic of its kind to receive the honor.
The initial certification was awarded in October 2022, but researchers at Indiana University School of Medicine, the affiliate medical school to Riley Children’s, have been researching Duchenne under a five-year, $3.8 million grant from the National Institutes of Health. Led by Roland Herzog, PhD, foundation professor of immunology for the department of pediatrics at IU School of Medicine, the project aims to study the mechanism of immune response to muscle-directed AAV gene transfer.
“Gene therapies for conditions like Duchenne muscular dystrophy have been developed, but they come with adverse side effects and may show diminishing effectiveness over time,” Dr. Herzog said. “With our new NIH grant, we can gain a deeper understanding of how the immune system responds to these treatments so we can develop more successful and effective ways to help patients living with muscle disorders.”
With the research Herzog and his team are piloting, it will serve as long-term support for the patients currently under care at the Duchenne clinic at Riley Children’s. Additionally, the clinic’s director and lead neuromuscular neurologist, Marcia Felker, MD, said the team has plans to elevate the care they provide to continue promising quality outcomes to patients.
“Our neuromuscular center at Riley Children’s is changing the lives of patients and families impacted by Duchenne and Becker Muscular Dystrophies, offering advanced treatments and compassionate care from a multi-disciplinary team of experts,” Dr. Felker said. “This certification signifies our commitment to enhancing the quality of life for our patients and furthering pivotal research towards a cure.”
Rachel Schrader, MS, APRN, CPNP-PC, PPMD’s vice president of clinical care and education and director of the CDCC program added, “The CDCC Certification Committee is truly impressed with the work the team at Riley Children’s is doing to provide and advance care for people living with Duchenne. The clinical team, researchers and hospital administration are deeply committed to contributing to the lives of people with the condition. We are eternally grateful for that.”
A certified center supports comprehensive care and services for people diagnosed with Duchenne and follows a standard guideline of care considerations. As the first certified center in the state to be a part of the PPMD and the CDCC network, the program at Riley Children’s is largely funded by a $5 million gift from long-time supporters of Duchenne care, the Ackerman and Nicholoff families.
“We are excited to see what good will come from this partnership for the Duchenne community, and look forward to a long and productive collaboration,” Schrader said.
Learn more about PPMD’s Certified Duchenne Care Center Program. To learn more about Duchenne muscular dystrophy and the neurology program at Riley Children’s, view the annual report.