Duchenne Muscular Dystrophy

Parent Project Muscular Dystrophy (PPMD) has been a strong advocate for the provision of Duchenne-specific, comprehensive, standardized care and management to people living with Duchenne muscular dystrophy, and publically communicating to the community the locations where that level of care is being provided. The Certified Duchenne Care Center Program (CDCC Program), a unique program of PPMD, aims to standardize and improve care across the United States through the evaluation and certification of centers that provide clinical care and services to people living with Duchenne muscular dystrophy. Centers that meet the CDCC Program criteria, and follow processes described in the Standards set forth in this document, may be certified as Certified Duchenne Care Centers (CDCC). Information regarding Certified Duchenne Care Centers, including clinical services, subspecialty services, care and performance against CDCC Program Standards and metrics, will be publically available on a PPMD website. A director will be appointed by PPMD to lead the CDCC Program. An independent Advisory Committee, made up of members of the Duchenne community (industry, professionals and parents), under the auspices of PPMD, will guide the development of the program. 

The Certification Committee, led by the director of the CDCC Program, and comprised of US experts in Duchenne care, will be responsible for the certification process. Following completion of program development, the Advisory Committee will be included in communications and discussions with the Certification Committee regarding continued program development, but will be excluded from the actual process of, and decisions regarding, the certification of specific centers. The certification process will involve a voluntary application, completion of both the Clinical and Subspecialty Services Survey and Duchenne Care Survey, a site visit including faculty and staff interviews, as well as a review of patient records. People living with Duchenne muscular dystrophy, their families and the greater Duchenne community can be confident that CDCC’s are providing standardized, comprehensive care that is in agreement with the care standards endorsed by the CDCC Program. Identifying Certified Duchenne Care Centers across the United States will aid in improving patient access to comprehensive Duchenne care. The “Certified Duchenne Care Center Program: Standards for Certification,” is a living document; updates to the program and process will be made as appropriate.

The Pediatric Neuromuscular Clinic at UCLA is held every first and third Wednesday of the month at 300 Medical Plaza Suite B200. 

Schedule/Re-Schedule Appointments: 
Call Jennifer Koo at (310) 405-9824

Routine Questions/Concerns: 
Contact Jennifer Koo, MSN, RN at (310) 405-9824 or Jgewirtz@mednet.ucla.edu (Expect a call back within 24 hours)

Urgent Questions: 
Call the UCLA Page Operator at (310) 825-6301 and ask to speak to any of the following physicians Dr. Perry Shieh, Dr. Nancy Halnon, Dr. Stanley Nelson (For a return call within 1 hour)

Emergency: Call 911

Community Support: 
Amy Martin at (310) 779-7422 or amymartin@ucla.edu

To learn more about the Center for Duchenne Muscular Dystrophy(CDMD) at UCLA please visit their website.