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to make comprehensive care accessible and available for all patients with Duchenne.

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. About the Certified Duchenne Care Center Program 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. 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. This results in speeding the time it takes therapies to reach the people who need them.

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Strengthening Research & Clinical Trialsīy 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. Your responses will help us to continue to sustain and improve the care and services provided to you and your family. Take Survey in English > Take Survey in Spanish >

Complete the Clinical Experiences Survey to provide feedback on the care experiences that you/your child has received.

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Join or update your information in The Duchenne Registry.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.

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Find a CenterĬlick 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.Ī very important part of care, and certification, is patient and parent input. PPMD’s Certified Duchenne Care Center Program is a growing network, and plans are being made to award other qualified centers. 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 helps to ensure that centers comply with the standards of care and services that have been established in the Duchenne Care Guidelines.

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. Duchenne Action Month & World Duchenne Awareness DayĮvery single person living with Duchenne deserves the best care possible.

PPMD For You: Schedule a One-To-One Meeting for Personalized Support.Knight Hacks: Everyday Tips & Tricks for Families.Decode Duchenne Free Genetic Testing Program.JuliaRJones, Julia Jones (born January 23, 1981) is an American actress, known for playing Leah Clearwater in The Twilight Saga films and Kohana in the HBO series Westworld. Leah Clearwater in The Twilight Saga films, Kohana in the HBO series Westworld The Boston Ballet School, Boston Latin SchoolĬolumbia University for a Degree in English