Parent Project Muscular Dystrophy Awards Children's Hospital Colorado; Names Hospital Certified Duchenne Care Center

Leading Duchenne Organization Creates Certified Duchenne Care Center Program

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Jun 17, 2014, 11:15 ET

HACKENSACK, N.J., June 17, 2014 /PRNewswire-USNewswire/ -- Children's Hospital Colorado (Children's Colorado) was named a Certified Duchenne Care Center by Parent Project Muscular Dystrophy (PPMD), the leading advocacy organization working to end Duchenne muscular dystrophy (Duchenne).

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 Hospital Colorado is a multidisciplinary clinic that serves around 300 children, adolescents and young adults from across the Rocky Mountain Region; approximately 160 have Duchenne.

PPMD recently launched the Certified Duchenne Care Center Program as part of its robust Transforming Duchenne Care Initiative. 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.

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 health care 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. Dennis J. Matthews, MD, 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.

PPMD's Vice President of Clinical Care Kathi Kinnett, MSN, CNP and co-director of TDCI remarked, "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. 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."

Ms. Kinnett is excited about the continued growth of PPMD's Certified Duchenne Care Center Program, and the collaborative efforts it recognizes: "PPMD is thrilled to have such dedicated and passionate partners like Children's Hospital Colorado that are dedicated to the essence of PPMD's mission to end Duchenne."

To learn more about PPMD's Certified Duchenne Care Center Program, visit PPMD's website.

About Duchenne Muscular Dystrophy

Duchenne muscular dystrophy is the most common fatal genetic disorder diagnosed in childhood, affecting approximately one in every 3,500 live male births (about 20,000 new cases worldwide each year). Because the Duchenne gene is found on the X-chromosome, it primarily affects boys; however, it occurs across all races and cultures.

Duchenne results in progressive loss of strength and is caused by a mutation in the gene that encodes for dystrophin. Because dystrophin is absent, the muscle cells are easily damaged. The progressive muscle weakness leads to serious medical problems, particularly issues relating to the heart and lungs. Young men with Duchenne typically live into their late twenties.

Duchenne can be passed from parent to child, but approximately 35 percent of cases occur because of a random spontaneous mutation. In other words, it can affect anyone. Although there are medical treatments that may help slow its progression, there is currently no cure for Duchenne.

About Parent Project Muscular Dystrophy

Duchenne is a fatal genetic disorder that slowly robs young men of their muscle strength. Parent Project Muscular Dystrophy (PPMD) is the largest most comprehensive nonprofit organization in the United States focused on finding a cure for Duchenne muscular dystrophy—our mission is to end Duchenne.

We invest deeply in treatments for this generation of young men affected by Duchenne and in research that will benefit future generations. We advocate in Washington, DC, and have secured hundreds of millions of dollars in funding. We demand optimal care, and we strengthen, unite and educate the global Duchenne community.

Everything we do—and everything we have done since our founding in 1994—helps boys with Duchenne live longer, stronger lives. We will not rest until every young man has a treatment to end Duchenne. Go to www.ParentProjectMD.org for more information or to learn how you can support our efforts and help families affected by Duchenne.

About Children's Hospital Colorado

Children's Hospital Colorado (Children's Colorado) has defined and delivered pediatric health care excellence for more than 100 years. Founded in 1908, Children's Colorado is a leading pediatric network entirely devoted to the health and well-being of children. Continually acknowledged as one of the nation's top ten Best Children's Hospitals by U.S. News & World Report and Parents magazine, Children's Colorado is known for both its nationally and internationally recognized medical, research, education and advocacy programs, as well as comprehensive everyday care for kids throughout Colorado and surrounding states. Children's Colorado also is recognized for excellence in nursing from the American Nurses Credentialing Centers and has been designated a Magnet® hospital since 2005. The hospital's family-centered, collaborative approach combines the nation's top pediatric doctors, nurses and researchers to pioneer new approaches to pediatric medicine. With urgent, emergency and specialty care locations throughout Metro Denver and Southern Colorado, including its campus on the Anschutz Medical Campus, Children's Colorado provides a full spectrum of pediatric specialties. For more information, visit www.childrenscolorado.org and connect with Children's Colorado on Facebook, Twitter and Pinterest.