URMC Designated as a Duchenne Care Center

Feb. 11, 2019
URMC Designated as a Duchenne Care Center

Parent Project Muscular Dystrophy (PPMD), a nonprofit organization dedicated to advancing care and research for patients with Duchenne muscular dystrophy, has named the University of Rochester Medical Center (URMC) a Certified Duchenne Care Center.  This program of leading centers, created in 2014 by PPMD, reviews and recognizes clinics nationwide for their outstanding neuromuscular programs. 

 “Our goal is to make a positive impact on the quality of life of children, adolescents, and adults affected by Duchenne by providing a team of experts in all specialties needed to best care for patients, a friendly and supportive atmosphere, and coordinated care that is highly accessible for families,” said Emma Ciafaloni, M.D., the director of the URMC Duchenne Muscular Dystrophy Clinic. “We are honored to be recognized by PPMD as a Certified Duchenne Care Center as we continue to provide the best care and support possible for Duchenne patients and their families.”

“Dr. Ciafaloni and the comprehensive team at the URMC Duchenne Muscular Dystrophy Clinic focus on all aspects of Duchenne, including timely diagnosis and multidisciplinary care,” said Kathi Kinnett, M.S.N., A.P.R.N., PPMD’s Senior Vice President of Clinical Care and director of the Certified Duchenne Care Center Program. “In addition, they are involved in a number of clinical trials and have led numerous clinical research efforts. Their commitment to maintaining the established standards of care makes them the perfect addition to PPMD’s Certified Duchenne Care Center Program.”

Duchenne muscular dystrophy (DMD) is a condition found almost exclusively in boys. The disease is characterized by muscle weakness which begins to appear at a young age and progresses rapidly leading to significant disability. Boys with the disease often end up in a wheelchair by age 9 or 10 because of weakness in their legs. The symptoms eventually spread to other parts of the body, including the heart and muscles responsible for breathing, and the disease is often fatal by the time the individual reaches his late teens. An estimated 12,000 people in the U.S. suffer from the disease.

PPMD’s Certified Duchenne Care Center Program, which consists of two dozen centers across the U.S., supports standardized, comprehensive care and services for all people living with Duchenne.  URMC is the only PPMD-designated center in New York State.   Certification means centers maintain the highest standards in clinical and sub-specialty services, rapidly apply new evidence-based knowledge, minimize heterogeneity in clinical research outcomes, and comply with standards in clinical care that were established by the Centers for Disease Control and Prevention.  PPMD is the largest nonprofit organization in the United States focused on finding a cure for Duchenne muscular dystrophy.