Find a Certified Duchenne Care Center
Every single person living with Duchenne deserves the best care possible. It is important that families know who is in charge of delivering the care they need and understand what centers are providing optimal, standardized care and services in agreement with the Duchenne Care Guidelines.
PPMD’s Certified Duchenne Care Center Program helps to ensure that centers comply with the standards of care and services that have been established in the Duchenne Care Guidelines. All Certified Duchenne Care Centers have met the requirements for, and agree to provide, optimal standardized care and services.
PPMD’s Certified Duchenne Care Center Program is a growing network, and plans are being made to award other qualified centers.
Find a Center
Click on the map markers below to learn more about a center, or select ‘Choose a Certified Care Center’ to view the full list of centers.
Provide Feedback on Your Care Center
A very important part of care, and certification, is patient and parent input. Updating your information in The Duchenne Registry and completing the Clinical Experiences Survey (below), will help us to continue to make sure that you/your child is receiving the best care possible.
- Join or update your information in The Duchenne Registry.
- Complete the Clinical Experiences Survey to provide feedback on the care experiences that you/your child has received.
Your responses will help us to continue to sustain and improve the care and services provided to you and your family.
Strengthening Research & Clinical Trials
By standardizing care at PPMD’s Certified Duchenne Care Centers, many of which are major clinical trial sites, we are also improving Duchenne research and clinical trials by decreasing variability in care and increasing the quality of clinical trial outcome measures. This results in speeding the time it takes therapies to reach the people who need them.
If you’re a person living with Duchenne or a caregiver for a person living with Duchenne, another way you can help us drive research is by joining The Duchenne Registry. Not only will your data help advance research and treatments for Duchenne, but it will also help you learn about and enroll in actively recruiting clinical trials and research studies.
About the Certified Duchenne Care Center Program
PPMD’s Certified Duchenne Care Center Program helps to ensure centers maintain the highest standards in clinical and sub-specialty services, rapidly apply new evidence based knowledge, and comply with standards in clinical care that were established by the CDC Care Considerations. The goals of the program are:
- to reduce discrepancies in care
- to make comprehensive care accessible and available for all patients with Duchenne
- to strengthen clinical trial outcomes by standardizing the care received by clinical trial subjects
Requirements for certification include the provision of standardized comprehensive clinical services and care. These requirements are in agreement with recommendations made by the DMD Care Considerations Working Group (DMDWG), which published the Centers for Disease Control and Prevention (CDC) Care Considerations, standards of Duchenne care which were published in 2010 and updated in 2018 and the Certified Duchenne Care Center (CDCC) Program’s Standards. All Certified Duchenne Care Centers have met the requirements for, and agree to provide, standardized comprehensive clinical care and services.
The CDCC is monitored by the CDCC Certification Committee – a steering committee of individuals who represent several areas of neuromuscular subspecialty care, parents, non-active industry, and PPMD. The committee reviews each application and site visit summary, and makes suggestions/recommendations regarding certification. If center issues arise, this committee gathers to discuss the issue and potential solutions, and to discuss these solutions with the center. It is then the responsibility of the committee to follow up on the solution and make sure that the recommendations are followed and that the issue is resolved.
PPMD works to certify centers, rather than medical providers, knowing that it is the team that is best at providing comprehensive, multidisciplinary care, rather than the practice of a single provider. If a key individual of the team leaves the center, it is the responsibility of the center director and the subspecialty department, to develop a contingency plan, allowing for consistent care during the period of transition, and to let both the families seen at that center and PPMD know about next steps.
It is also the responsibility of the director to ensure that both the interim and new providers are brought up to speed with regards to the standards of Duchenne care in that sub-specialty area, across the lifespan of Duchenne, so that the standard of care continues to be available to families, no matter the circumstance.
If your center is interested in becoming a Certified Duchenne Care Center, please email careteam@parentprojectmd.org or schedule a time to meet here.
