The Kennedy Krieger Institute in Baltimore, Maryland has been granted Certified Duchenne Care Center status by the Parent Project Muscular Dystrophy (PPMD) advocacy group. The institute is the fifth institution to receive the designation, which recognizes its dedication to the improvement of healthcare services for patients suffering from Duchenne muscular dystrophy.
Along with the new designation, Kennedy Krieger Institute is now part of the recently launched Certified Duchenne Care Center Program, which was created as part of the PPMD’s Transforming Duchenne Care Initiative. PPMD aims to award qualified centers with the designation in order to improve clinical services standards, rapidly apply new evidence-based knowledge, minimize heterogeneity in research results, and comply with standards of care according to the CDC’s Care Considerations.
PPMD is working to ensure that all DMD patients, who number approximately 1 in every 3,500 to 5,000 newborn boys, have access to comprehensive care. DMD is the most common fatal genetic disease affecting children, and Kennedy Krieger is dedicated to the same standards that the PPMD advocates for, providing comprehensive, interdisciplinary, and individualized healthcare services to DMD patients.
The director of the Center for Genetic Muscle Disorders at the Kennedy Krieger Institute, Kathryn Wagner, who is an associate professor of Neurology and Neuroscience at the Johns Hopkins School of Medicine, is responsible for the collaboration between the Institute and PPMD.
“Dr. Wagner has long been a leader in Duchenne care. Her investment in patients and their families is apparent and appreciated by the Duchenne patient and professional communities. Her dedication to both care and research has long been recognized,” said PPMD’s vice president of clinical care and co-director of TDCI, Kathi Kinnett, MSN, CNP. “PPMD has worked closely with Kennedy Krieger since the inception of the Center for Genetic Muscle Disorders five years ago and we are excited to award the title of Certified Duchenne Care Center to Kennedy Krieger.”
Wagner has also stated that with the certification, “PPMD has had a profoundly positive impact on the lives of those with Duchenne muscular dystrophy. This has included funding of research, education of parents, lobbying for legislative changes and establishing clinical care guidelines. All of us at Kennedy Krieger are proud to be a part of this new initiative to recognize clinical centers of excellence so that families know that they are receiving the best available care.”