Parent Project Muscular Dystrophy (PPMD) recently recognized Children’s Hospital Los Angeles as a Certified Duchenne Care Center (CDC). The hospital is one of only 10 facilities in the U.S. to hold this distinction and the only one in Southern California since the PPMD began qualifying healthcare centers in 2014.
“Being distinguished as a Certified Duchenne Care Center tells patients and families that Children’s Hospital Los Angeles is among the elite centers in the U.S. to go for the highest quality of care for those living with Duchenne,” CHLA Neuromuscular Program Director Leigh Maria Ramos-Platt, MD, said in a press release. “I am proud of our team for providing the best expertise, best practices, and also the most heartfelt approach to reducing symptoms and improving each patient’s quality of life.”
The Certified Duchenne Care Center Program distinguishes institutions with high quality level of expertise and care, seeking to establish healthcare centers with the best clinical services, new scientific and clinical evidence, and the latest medical research in Duchenne care and potential treatments. The healthcare centers and hospitals are expected to carefully follow the care standards defined by the U.S. Centers for Disease Control and Prevention.
The CDC guidelines are summarized in a review paper titled “Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and pharmacological and psychosocial management.” The work, which represents the academic evidence of the PPMD’s Duchenne Care guidelines, describes the work of 84 clinicians selected by the CDC for the establishment of diagnosis tools for recognizing primary manifestations of the disease, coordination of multidisciplinary care, pharmacological treatment and psychosocial care.
The CHLA Neuromuscular Program, led by Ramos-Platt and coordinated by Arlene Deseo, RN, treats hundreds of patients a year under the age of 21 with different neuromuscular disorders, such as muscular dystrophy and spinal muscular atrophy (SMA), among others. The community includes 200 muscular dystrophy patients, 100 suffering from Duchenne and many for whom English is not their first language.
The fast-growing and comprehensive program, while just beginning to participate in clinical trials, has worked closely with other institutions for referral of patients to clinical studies elsewhere. The program also oversees the transition of its pediatric patients to adult care programs.
Families and patients representing the Parent Project Muscular Dystrophy presented CHLA’s Neurology Division with a plaque recognizing CHLA as a Certified Duchenne Care Center.
“The team at Children’s Hospital Los Angeles is the perfect illustration of one of the reasons PPMD launched this program,” said Kathi Kinnett, MSN, CNP, the PPMD’s senior vice president of clinical care and co-director of Transforming Duchenne Care Initiative. “They have assembled and trained a team of incredibly talented care professionals who believe strongly in the benefits of optimal care for people with Duchenne.”
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