Monday, 31 March 2014

Certified Duchenne Care Center Program - PPMD Community

Certified Duchenne Care Center Program - PPMD Community: "Right now, there are more than 10-12,000 young people diagnosed and living in the United States with Duchenne. These young people are being cared for by clinics both near and far. Every one of them deserves the best care and treatment possible. Families want care and treatment to be transparent; they want to know who is delivering care to their child, what comprehensive care looks like, and which centers are delivering that care. For this reason, a group of experts agreed to give families the information that they deserve and to develop a methodology and process by which to certify clinics delivering comprehensive care, and then measure results.

PPMD’s Transforming Duchenne Care Initiative (TDCI) set out to reduce discrepancies in care. The goal – to make comprehensive care, aligned with the recommendations of the DMD Care Considerations Working Group (DMDWG, which published the CDC Care Considerations standards of Duchenne care, made available in 2009 and published in 2010), available and accessible to as many patients across the US as possible."

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