Cincinnati Children’s Hospital Medical Center has been named the third Certified Duchenne Care Center by Parent Project Muscular Dystrophy (PPMD).
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. As part of its ongoing mission to end Duchenne, PPMD promises to insist that all people with Duchenne receive standardized comprehensive care.
There are 10-12,000 young men, and some women, in the U.S. living with Duchenne muscular dystrophy. 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.
-- Pat Furlong, PPMD Founding President & CEO
The Comprehensive Neuromuscular Center at Cincinnati Children’s is dedicated to helping 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. In addition to neuromuscular specialists, the staff includes 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. 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. Cincinnati Children’s continues to be a leader in the provision of optimal care to families in the Duchenne community, and we are very happy to be able to recognize them as a Certified Duchenne Care Center.
-- Kathi Kinnett, MSN, CNP, PPMD Vice President of Clinical Care
PPMD launched the Certified Duchenne Care Center Program as part of its Transforming Duchenne Care Initiative. Launched in 2012, this initiative began with a meeting of health care providers and administrators from 17 institutions, parents, and representatives from government agencies and the pharmaceutical industry concerned with discrepancies in the care of families living with Duchenne across the country. The Certified Duchenne Care Center Program is the natural evolution of that initiative.
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. We see this as a verification of our leading role in improving life for children and families with Duchenne.
-- Dr. Brenda Wong, Cincinnati Children’s