Expanding its network of institutions that provide standardized, comprehensive care for Duchenne patients, the Parent Project Muscular Dystrophy (PPMD) has named Children’s National Health System its newest Certified Duchenne Care Center (CDCC).
This most recent designation brings to 20 the number of clinics to pass muster since the CDCC program began in 2014. Such centers must comply with set standards of care in clinical and sub-specialty services, minimize diversity in clinical research outcomes, and offer comprehensive care for Duchenne muscular dystrophy patients.
Based in Washington, D.C., Children’s National specializes in the diagnosis, treatment, and research of neuromuscular diseases including Duchenne. According to its website, the hospital’s neuromuscular medicine program boasts interdisciplinary teamwork, up-to-the-minute research, and novel technologies.
“Gaining this certification underscores the high standards of our program and of Children’s National,” said Sally Evans, MD, division chief of pediatric rehabilitation medicine, in a press release. “It lets patients and specialists know to expect the best level of care from our hard-working, passionate team.”
Kathi Kinnett, PPMD’s vice president of clinical care and director of the CDCC program, said recent changes at Children’s National have served to improve Duchenne patient care.
“They have also worked extremely hard to communicate those enhancements to the community, getting feedback which will allow continuous quality improvement for this center and for the Duchenne families engaged with this center,” she said, adding that PPMD gets inquiries weekly from centers interesting in gaining CDCC status.
PPMD’s certification program is rooted in the belief that comprehensive Duchenne care and services should be widely available and accessible, and that standardized care will improve research and clinical trials. That, in turn, will accelerate development of therapies. As part of its selection process, the program takes into consideration feedback from the Duchenne patient community.
As the importance of set standards and guidelines in clinical care is increasingly recognized worldwide, PPMD will partner with other patient advocacy groups to expand the program internationally next year, Kinnett said. Program requirements are available here.
In partnership with the Centers for Disease Control and Prevention, PPMD also advocates for and participates in the development of Duchenne standards of care, as well as updates. These updated guidelines were published earlier this year in the journal Lancet Neurology and can be downloaded here, along with the 2018 Duchenne Family Guide.
Duchenne muscular dystrophy is genetic disorder characterized by progressive muscle loss, Duchenne is a multisystemic condition caused by a change in the dystrophin gene. It affects roughly 1 in 5,000 live male births.
Nonprofit PPMD is helping to advance Duchenne research, working to ensure therapy access, and advocating on patients’ behalf. The ultimate goal is a cure for the disease.