The University of Virginia (UVA) Children’s Hospital has been named a Certified Duchenne Care Center by Parent Project Muscular Dystrophy (PPMD), making it the 22nd such center recognized by the patient advocacy group for the quality and comprehensiveness of its neuromuscular program.
UVA’s hospital is also the first CDCC with a prominent focus on developmental pediatrics in Duchenne muscular dystrophy (DMD) care.
The Certified Duchenne Care Center (CDCC) program, a PPMD initiative since 2014, recognizes health centers that uphold high standards in Duchenne-related clinical and sub-specialty services, rapidly apply new evidence-based knowledge, minimize disparateness in clinical research outcomes, and comply with standards in clinical care as defined by the U.S. Centers for Disease Control and Prevention.
At UVA, the neuromuscular program is led by Rebecca Scharf, MD, a developmental pediatrician who has helped to set in place a multidisciplinary team of experts to provide care across areas relevant to managing DMD. They include physical therapy, occupational therapy, speech-language pathology, nursing, nutrition, orthopedics, cardiology, pulmonology, palliative care, psychology, genetic counseling, and social work.
“We are excited to include UVA as our first Certified Duchenne Care Center featuring developmental pediatrics in a prominent role in Duchenne surveillance and management”, Kathi Kinnett, PPMD’s senior vice president of clinical care and director of its CDCC program, said in a news release. “Dr. Scharf understands the developmental, educational, and psychosocial issues that need to be addressed with families throughout their lives,” as does her team.
PPMD is a nonprofit organization that funds therapy-oriented research, raises awareness, promotes advocacy, and works to improve the lives of those affected by DMD. It helps families in finding accessible and recognized DMD-oriented healthcare centers. According to Kinnett, clinics, clinicians and the pharmaceutical industry are realizing the value of the CDCC program and consequently work to be the best at their field.
The CDCC program will continue to U.S. medical centers with exceptional neuromuscular programs. PPMD also plans to take the initiative worldwide in 2019.
“PPMD looks forward to expanding this program internationally in the New Year by partnering with other patient advocacy groups. We also look forward to more certifications in the U.S. in 2019,” Kinnett said.
Certified Duchenne Care Centers across the U.S. and their contact information can be found here.