Parent Project Muscular Dystrophy (PPMD), a nonprofit organization in the fight to end Duchenne muscular dystrophy (DMD), has confirmed Children’s Mercy Hospital in Kansas City, Mo., as a Certified Duchenne Care Center.
“I am very proud of our multidisciplinary team,” said Dr. Ann Modrcin, director of the hospital’s Division of Rehabilitation, in a press release. “The certification followed an intensive site review, and reflects our group’s and our hospital’s commitment. Our team provides comprehensive, evidence-based care, along with longitudinal management of boys with Duchenne, and other children with nerve or muscle disorders.”
Children’s Mercy Hospital’s clinic is the 11th in the U.S. to be certified by the PPMD.
Patients and families living with DMD benefit from PPMD’s Certified Duchenne Care Center Program, which supports standardized, comprehensive care and services for patients. The organization started center certification in March 2014, as part of its Transforming Duchenne Care Initiative (TDCI). Since then, the program has expanded.
TDCI’s co-director and senior senior vice president of clinical care Kathi Kinnett said organization leaders “had no idea” that the Duchenne community would respond so positively.
“Families have come to rely on our certification as an indication that these clinics are the best of the best. Throughout 2016, we will continue to certify more clinics across the country, recognizing teams of physicians for their leadership in Duchenne care and enabling families to make the best choice for the care of their child,” Kinnett said, referring to a list of requests from centers seeking certification.
DMD is the most common fatal genetic disorder affecting children – nearly one in every 5,000 boys.
The comprehensive Duchenne Care team currently serves up to 100 families who live in urban and rural areas of America’s heartland. They have implemented a formalized transition program in collaboration with area providers to help smooth patient transfer from pediatric to adult care. The nonprofit’s commitment to palliative care is also considered exceptional, with dedication to developing relationships with families early in the diagnoses to allow followup throughout the patients’ lives.
Kinnet welcomed Children’s Mercy into the family.
“Children’s Mercy Hospital has worked diligently to develop a robust team of providers offering comprehensive care and services to families in our community,” Kinnet said. “We applaud their efforts and are pleased to recognize the program that they have built. PPMD’s Certified Duchenne Care Center Program is thrilled to include Children’s Mercy Hospital in our expanding network of comprehensive Duchenne care.”