Tuesday, July 29, 2014
Cincinnati Children’s Hospital Medical Center 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. 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,” 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 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,” 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. 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.”
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,” says Dr. Wong. “We see this as a verification of our leading role in improving life for children and families with Duchenne.”
Cincinnati Children’s Hospital Medical Center ranks third in the nation among all Honor Roll hospitals in U.S.News & World Report’s 2014 Best Children’s Hospitals. It is also ranked in the top 10 for all 10 pediatric specialties. Cincinnati Children’s, a non-profit organization, is one of the top three recipients of pediatric research grants from the National Institutes of Health, and a research and teaching affiliate of the University of Cincinnati College of Medicine. The medical center is internationally recognized for improving child health and transforming delivery of care through fully integrated, globally recognized research, education and innovation. Additional information can be found at www.cincinnatichildrens.org. Connect on the Cincinnati Children’s blog, via Facebook and on Twitter.
Duchenne is a fatal genetic disorder that slowly robs young men of their muscle strength. Parent Project Muscular Dystrophy (PPMD) is the largest most comprehensive nonprofit organization in the United States focused on finding a cure for Duchenne muscular dystrophy—our mission is to end Duchenne. We invest deeply in treatments for this generation of young men affected by Duchenne and in research that will benefit future generations. We advocate in Washington, DC, and have secured hundreds of millions of dollars in funding. We demand optimal care, and we strengthen, unite and educate the global Duchenne community. Everything we do—and everything we have done since our founding in 1994—helps boys with Duchenne live longer, stronger lives. We will not rest until every young man has a treatment to end Duchenne. Go to www.ParentProjectMD.org for more information or to learn how you can support our efforts and help families affected by Duchenne.