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PPMD Names Children’s Hospital Los Angeles 10th Certified Duchenne Care Center

PPMD Awards Tenth Clinic Certification as Part of Effort to Ensure People with Duchenne Receive Optimal Care

Children’s Hospital Los Angeles (CHLA) became the tenth clinic named a Certified Duchenne Care Center by Parent Project Muscular Dystrophy (PPMD). 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.

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.

Dr. Ramos-Platt:

“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. 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.

 

To learn more about PPMD’s Certified Duchenne Care Center Program, visit PPMD’s website

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