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Duchenne muscular dystrophy is the most common fatal genetic disorder diagnosed in childhood, affecting approximately one in every 3,500 live male births. Established in 1988, the Muscle Clinic at Children’s Colorado is a multidisciplinary clinic that serves around 300 children, adolescents and young adults from across the Rocky Mountain Region; approximately 160 have Duchenne.
Ensuring Duchenne centers maintain the highest standards
PPMD recently launched the Certified Duchenne Care Center Program as part of its Transforming Duchenne Care Initiative (TDCI). PPMD will award other qualified centers the title of Certified Duchenne Care Center over the next several months in an effort 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. As part of its ongoing mission to end Duchenne, PPMD promises to insist that all people with Duchenne receive comprehensive care.
Children's Colorado plays integral part in Transforming Duchenne Care Initiative
The Certified Duchenne Care Center Program was a direct result of PPMD’s Transforming Duchenne Care Initiative (TDCI). Launched in 2012, TDCI was the coming together of healthcare providers and administrators from 17 institutions, parents, representatives from government agencies and the pharmaceutical industry.
Children’s Colorado has been a pivotal partner with PPMD in the Transforming Duchenne Care Initiative, along with Nationwide Children’s Hospital in Columbus, Ohio, which is the only other recipient of the Certified Duchenne Care Center Program.
Dr. Matthews helps to develop national neuromuscular care measures
Dr. Dennis Matthews, a neuromuscular specialist and chair of Pediatric Rehabilitation Medicine at Children’s Colorado, has played an integral part in the TDCI. As a noted expert in Duchenne care, Dr. Matthews was involved in developing the measures now being used to evaluate neuromuscular care across the country.
“We are very fortunate to have Dr. Matthews involved in this extremely important program. As a leader in the Duchenne community, his experience and expertise are invaluable,” said Kathi Kinnett, vice president of Clinical Care at PPMD. “We are pleased to recognize the comprehensive program at Children’s Hospital Colorado and support their efforts in continuing to provide outstanding care to patients and families living with Duchenne.”
“Children’s Colorado is pleased to solidify this partnership with PPMD,” said Dr. Matthews. “We’re dedicated to quality improvement initiatives that can advance the standards of care and quality of life for all patients and families affected by Duchenne."