HACKENSACK, N.J., April 19, 2016 /PRNewswire-USNewswire/ -- Children's Hospital Los Angeles (CHLA) became the tenth clinic named a Certified Duchenne Care Center by Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne muscular dystrophy (Duchenne). PPMD's Certified Duchenne Care Center Program supports standardized, comprehensive care, and services for all people living with Duchenne, and began certifying qualifying centers in March 2014. PPMD is pleased to recognize Children's Hospital Los Angeles for their multidisciplinary care team and their heartfelt attention to people and families living with Duchenne.
Duchenne muscular dystrophy is the most common fatal genetic disorder diagnosed in childhood, affecting approximately one in every 5,000 live male births.
Children's Hospital Los Angeles features a neuromuscular program led by Leigh Ramos-Platt, MD, and coordinated by Arlene Deseo, RN. This center serves a largely urban population of 200 muscular dystrophy patients, 100 of which are living with Duchenne and many for which English is not their first language. While they are just beginning to engage in clinical trials, they have always worked closely with other institutions, referring patients who are interested and potentially qualified for trials. CHLA is a pediatric institution, providing comprehensive Duchenne care for patients and families until patients reach 21 years old. CHLA works closely with UCLA, transitioning patients after age 21 to adult care. CHLA proudly boasts a 100% show rate for clinic and the capability to meet the needs of their unique patient population.
"Being distinguished as a Certified Duchenne Care Center by Parent Project Muscular Dystrophy 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," says Dr. Ramos-Platt. "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."
Kathi Kinnett, MSN, CNP, PPMD's Senior Vice President of Clinical Care and co-director of Transforming Duchenne Care Initiative (TDCI), is excited that Children's Hospital Los Angeles is being recognized as the tenth certified center: "The team at Children's Hospital Los Angeles is the perfect illustration of one of the reason's PPMD launched this program. Over the course of the last year, Dr. Ramos Platt and Arlene have worked tirelessly to ensure that CHLA was able to meet the clinical and subspecialty services and care required for PPMD certification. They understand that the endorsement of this program is important to all stakeholders in Duchenne community. 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."
Kinnett says that the PPMD receives numerous requests from centers wanting to be considered for certification. "When PPMD launched our certification program two years ago, we had no idea that the Duchenne community would respond so positively. Families have come to rely on our certification as an indication that these clinics are the best of the best. Throughout 2016, we will continue to certify more clinics across the country, recognizing teams of physicians for their leadership in Duchenne care and enabling families to make the best choice for the care of their child."
In 2014, PPMD launched the Certified Duchenne Care Center Program as part of its robust Transforming Duchenne Care Initiative (TDCI). PPMD will continue to award qualified centers the title of Certified Duchenne Care Center in an effort to ensure 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 CDC Care Considerations. As part of its ongoing mission to end Duchenne, PPMD continues to insist that all people with Duchenne receive comprehensive care.
About Parent Project Muscular Dystrophy
Duchenne is a fatal genetic disorder that slowly robs young men of their muscle strength. Parent Project Muscular Dystrophy (PPMD) is the largest most comprehensive nonprofit organization in the United States focused on finding a cure for Duchenne muscular dystrophy—our mission is to end Duchenne.
We invest deeply in treatments for this generation of young men affected by Duchenne and in research that will benefit future generations. We advocate in Washington, DC, and have secured hundreds of millions of dollars in funding. We demand optimal care, and we strengthen, unite and educate the global Duchenne community.
Everything we do—and everything we have done since our founding in 1994—helps boys with Duchenne live longer, stronger lives. We will not rest until every young man has a treatment to end Duchenne. Go to www.ParentProjectMD.org for more information or to learn how you can support our efforts and help families affected by Duchenne.
About Children's Hospital Los Angeles
Children's Hospital Los Angeles has been named the best children's hospital in California and among the top 10 in the nation for clinical excellence with its selection to the prestigious U.S. News & World Report Honor Roll. Children's Hospital is home to The Saban Research Institute, one of the largest and most productive pediatric research facilities in the United States. Children's Hospital is also one of America's premier teaching hospitals through its affiliation since 1932 with the Keck School of Medicine of the University of Southern California.
SOURCE Parent Project Muscular Dystrophy