Cincinnati Children’s has been named the third Certified Duchenne Care Center by Parent Project Muscular Dystrophy (PPMD), the leading advocacy organization working to end Duchenne muscular dystrophy.
PPMD established certified centers to create a network capable of providing the highest standards in clinical and sub-specialty services, applying new evidence based knowledge, and complying with standards in clinical care that were established in the CDC’s care considerations guidelines.
“There are 10-12,000 young men, and some women, in the U.S. living with Duchenne muscular dystrophy,” says Patricia Furlong, PPMD founding president and CEO. “Every one of these people deserves the best care and treatment possible. Parents, caregivers, and patients have the right to know who is in charge of delivering the care they require and to understand what clinics meet optimal standards. The Certified Duchenne Care Center Program is doing just that.”
The Comprehensive Neuromuscular Center at Cincinnati Children’s helps children, adolescents and adults with neuromuscular disorders live better, fuller lives. Directed by Brenda Wong, MD, the Center cares for more than 600 families from around the world living with Duchenne. The staff includes neuromuscular specialists and experts from nursing, care coordination, pulmonary medicine, cardiology, pediatric rehabilitation, genetics, physical therapy, gastroenterology, nutrition therapy, social services, psychology, neuropsychology, endocrinology, ophthalmology and orthopaedics.
“Cincinnati Children’s has long been a leader in the comprehensive care of patients and families living with Duchenne,” says Kathi Kinnett, MSN, CNP, vice president of clinical care at PPMD. “Dr. Wong’s innovative approach to neuromuscular care raised the bar for Duchenne care across the country, and this model has now been duplicated in numerous institutions.”
PPMD launched the Certified Duchenne Care Center Program in 2012 as part of its Transforming Duchenne Care Initiative, which includes parents, representatives from government agencies and the pharmaceutical industry, and 17 health care institutions.
“It is important to us that this designation comes from PPMD because of its commitment to advance research in Duchenne muscular dystrophy, improve clinical care and advocate as the voice of the Duchenne community,” Wong says. “We see this as a verification of our leading role in improving life for children and families with Duchenne.”