PPMD continues to advocate to ensure families navigating a diagnosis of Duchenne and Becker muscular dystrophy have access to optimal care for their loved ones. The Certified Duchenne Care Center Program (CDCC Program), a unique program of PPMD, aims to ensure all individuals with Duchenne and Becker have access to high quality, comprehensive, and coordinated care and research. The program is rooted in 5 guiding principles: Quality, Advancement, Education, Collaboration, and Transparency.
History of the Program
Prior to 2001, there were no standards of care for Duchenne. Thanks to our champions in Congress, in 2001 the Muscular Dystrophy Care Act (MD-CARE Act) was signed into law, which included a requirement for the development of Standards of Care. Following this legislation, PPMD worked in partnership with the CDC to create and implement the 2010 Duchenne Care Considerations, which were then updated in 2018. The development of these standards of care led to the first Certified Duchenne Care Center in 2014. 11 years later, there are now 38 certified centers across the United States who demonstrate excellence in providing quality care to individuals living with Duchenne and Becker muscular dystrophy.
Requirements for Certified Duchenne Care Center
PPMD’s Certified Duchenne Care Center program not only elevates the quality of care for patients but also serves as a valuable resource for clinical trials and community support. Certified centers undergo a rigorous application process and in person evaluation to ensure they meet strict criteria including having experienced Duchenne specialists, offering coordinated care, and providing comprehensive services and treatments in line with the current Standards of Care. Certification is granted after a review by an independent certification committee, consisting of Duchenne healthcare experts across the country. Centers are required to reapply every 5 years, at which point additional evaluation occurs. Certification gives families confidence that they’re receiving care from providers who understand the unique challenges of Duchenne and can deliver evidence-based treatments.
NEW! Clinical Research Designation
While every certified center provides excellence in care, some families wish to pursue clinical trials and research opportunities. In 2025, PPMD is pleased to share the establishment of an optional Clinical Research Designation. This designation is available to new centers who are applying for initial certification as well as current certified centers to highlight CDCCs that demonstrate a commitment to excellence in conducting Duchenne clinical trials and research. Not all certified care centers engage in clinical research, which means they may instead coordinate with other institutions to ensure their patients have access to clinical trials and the most up to date research opportunities.
PPMD will be evaluating all of the certified centers over the next couple of years and issuing clinical research designations on a rolling basis. We hope to have all Clinical Research Designations awarded to current centers by the end of 2026. If you have questions about your current center or availability of clinical trials during this time, please email careteam@parentprojectmd.org for more information.
To find a list of current Certified Duchenne Care Centers, visit here.
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