PPMD Community

PPMD Designates Center for Duchenne Muscular Dystrophy at UCLA, a Certified Duchenne Care Center

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

 

The Center for Duchenne Muscular Dystrophy at the University of California, Los Angeles (CDMD) became the 12th 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 CDMD and the team at UCLA for their innovative approach to Duchenne care for people living with the disease.

The Center for Duchenne Muscular Dystrophy at UCLA is led by a multidisciplinary group of scientists and clinicians, working to advance research and clinical care for Duchenne and related muscular dystrophies. Patients come from all over southern California and the US to receive comprehensive care. The program helps patients at all stages, from suspected childhood diagnosis through adulthood and provides genetic testing for women who may carry the mutation. The CDMD is a leader in translational research on the disorder.

 

“We are thrilled to join with other centers to partner as a Certified Duchenne Care Center and further improve care for patients with Duchenne,” states Nancy Halnon, MD, CDMD Clinical Liaison, professor of pediatric cardiology at the David Geffen School of Medicine at UCLA. UCLA specialists address the full spectrum of Duchenne care, from neurology and cardiology to pulmonology and genetics. The clinic also provides ancillary services, including social work, physical therapy, equipment specialists, orthotics, respiratory therapy, and child life.

 

“UCLA’s multidisciplinary clinic is uniquely equipped to provide lifelong care for boys and young men affected by muscular dystrophy,” said Perry Shieh, director of the neuromuscular program at the David Geffen School of Medicine at UCLA. “We are pleased that people come from all over the world to receive clinical care and participate in our research trials. This is a great honor to be recognized by PPMD.” The clinic is jointly managed by neurologist Dr. Perry Shieh, cardiologist Dr. Nancy Halnon and geneticist Dr. Stanley Nelson.

 

Kathi Kinnett, MSN, CNP, PPMD’s Senior Vice President of Clinical Care and co-director of Transforming Duchenne Care Initiative (TDCI), is thrilled to award CDMD certification for their dedication to Duchenne patients: “The families in Los Angeles are extremely fortunate to have this team of dedicated clinicians and researchers at UCLA.  While the research conducted at this center has previously been recognized, we are excited to be able to also recognize the stellar clinical care available to families seen at this center. We are excited to include the Center for Duchenne Muscular Dystrophy at UCLA in our growing network of comprehensive Duchenne care.”

 

Kinnett says that 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. We will continue to certify more clinics across the country this year and throughout 2017, 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

Views: 277

Comment

You need to be a member of PPMD Community to add comments!

Join PPMD Community

© 2017   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service