Parent Project Muscular Dystrophy (PPMD), one of the largest nonprofit organizations in the U.S. working to find a cure for Duchenne muscular dystrophy (DMD), recently announced that it will continue to support a grant for the Certified Duchenne Care Center (CDCC) Program.
PPMD invests in research, advocacy, and initiatives to improve the lives of those affected by the disease. One of its most well-known initiatives is the CDCC program.
In 2012, PPMD invited 17 institutions, parent organizations, and representatives from advocacy groups and legislators to participate in the first Transforming Duchenne Care Initiative (TDCI) meeting. This meeting established the standards and goals for comprehensive care and services needed for DMD patients. Attendees discussed the components of this program, identified discrepancies in care and services, and offered ideas to address these discrepancies.
PPMD then launched the Certified Duchenne Care Center Program in 2014. To date, 17 centers in the U.S. have been named a Certified Duchenne Care Center.
The goal is for all people with DMD to receive comprehensive care. The title ensures that the highest possible standards in clinical and sub-specialty services are met and sustained; new evidence-based knowledge is applied as soon as it is available; heterogeneity in clinical research outcomes is minimized; and standards in clinical care, established in the CDC Care Considerations Guidelines, are respected.
“The response to the CDCC program from the community has been tremendous,” Kathi Kinnett, PPMD’s senior vice president of clinical care and co-director of TDCI, said in a press release.
“All stakeholders in the Duchenne community, including families, industry, and providers, have come to value the standardized care and services that the CDCCs offer. In addition to improving patient and family access to comprehensive care and services, many of these CDCCs are major clinical trial sites. By providing CDCCs with the resources to secure a research liaison, we are providing families with an informed guide to help them navigate the diagnostic odyssey of Duchenne,” Kinnett added.
A map of all Certified Duchenne Care Centers and links to their websites are available here.
A significant part of this certification process is patient and parent input. For those using care services at one of the certified centers, updating user information at DuchenneConnect and completing a clinical experience survey will help PPMD continue to ensure the best care possible.