(From the May 2014 Issue of PediatricsOnline)
Nationwide Children’s Hospital was named the first Certified Duchenne Care Center by Parent Project Muscular Dystrophy (PPMD), the leading advocacy organization working to end Duchenne muscular dystrophy (Duchenne). PPMD is launching the Certified Duchenne Care Center Program as part of its robust Transforming Duchenne Care Initiative. Over the coming year, plans are being made to award other qualified centers the title of Certified Duchenne Care Center in an effort to ensure centers maintain the highest standards in clinical and sub-specialty services, rapidly apply new evidence based knowledge, and comply with standards in clinical care that were established by the CDC Care Considerations. As part of its ongoing mission to end Duchenne, PPMD promises to insist that all people with Duchenne receive comprehensive care.
PPMD Founding President and CEO, Patricia Furlong, explained the reason for the new certification program: “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. And while each of them may receive care from a local – or in many cases, not so local – clinic, there has been no program in place to help guarantee that care is transparent and to help families know what care is supposed to look like. 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 will do just that.”
The Certified Duchenne Care Center Program was a direct result of PPMD’s Transforming Duchenne Care Initiative (TDCI). Launched in 2012, TDCI was the coming together of health care providers and administrators from 17 institutions, parents, representatives from government agencies, and the pharmaceutical industry. PPMD’s Vice President of Clinical Care, Kathi Kinnett, MSN, CNP and a co-director of TDCI, described the topics the attendees determined to be most important: “As a committee, we found there to be significant discrepancies in the clinical care of people living with Duchenne. Parents wanted to have transparent, accurate information regarding providers and services available at each clinic easily accessible, preferably online. Parents and care providers wanted to know whether clinics were providing care in agreement with the CDC Care Considerations. And industry was having difficulty conducting clinical trials and research due to discrepancies both in care and models of care across the country. The goal of this program, as it was in 2012, is to reduce discrepancies in care and to make comprehensive care accessible and available for all patients with Duchenne.”
Nationwide Children’s Hospital has been a pivotal partner with PPMD in TDCI and was the perfect hospital to navigate the inaugural certification process. “We are deeply honored to be named the first Certified Duchenne Care Center,” said Jerry Mendell, M.D., director of the Center for Gene Therapy in The Research Institute at Nationwide Children’s Hospital, director of the Paul D. Wellstone Muscular Dystrophy Cooperative Research Center, co-director of the Muscular Dystrophy Association Clinic, and a faculty member at The Ohio State University College of Medicine. “We are indebted to organizations like PPMD whose tireless efforts invigorate those of us working in muscular dystrophy research and clinical care.”
Ms. Kinnett says that the committee plans to grow PPMD’s Certified Duchenne Care Center Program slowly: “We hope to certify five additional centers this year, with hopes of adding another five to six clinics in 2015.”