Today Parent Project Muscular Dystrophy (PPMD) named the Neuromuscular Disorders Program at Children’s Hospital of Wisconsin to be the 21st clinic to be named a Certified Duchenne Care Center
PPMD’s Certified Duchenne Care Center Program, which supports standardized, comprehensive care and services for all people living with Duchenne, began certifying qualifying centers in 2014. Certification means centers maintain the highest standards in clinical and sub-specialty services, rapidly apply new evidence-based knowledge, minimize heterogeneity in clinical research outcomes, 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 continues to insist that all people with Duchenne receive comprehensive care.
Over the past two years, clinic director Matthew Harmelink, MD, and care coordinator Gretchen Heckel, RN, have worked to tirelessly to organize comprehensive care at Children’s Hospital of Wisconsin’s Neuromuscular Disorders Program for several neuromuscular diagnoses, including Duchenne muscular dystrophy.
Dr. Harmelink says, “Being recognized as a Duchenne’s Care Center illustrates our group’s high level of commitment to children with Duchenne muscular dystrophy. In the last few years, the clinic has grown from a respectable clinical care center into a research center with an additional site in Fox Valley to start seeing patients in early 2019. This is a growing field with new treatments on the horizon. Being certified demonstrates our commitment to being part of this progress.”
Kathi Kinnett, MSN, CNP, PPMD’s Senior Vice President of Clinical Care and director of PPMD’s Certified Duchenne Care Center (CDCC) Program, is pleased that the Children’s Hospital of Wisconsin will now be included in the growing network of Duchenne care offered at the 21 Certified Duchenne Care Centers across the Unites States.
“In a very short time, Dr. Harmelink and his team have managed to organize a comprehensive panel of providers capable of providing Duchenne care across the progression of this diagnosis. Having two comprehensive clinics per month, this center is able to provide care, information, and resources to patients and families living with Duchenne living in upper and middle Wisconsin, as well as Illinois. We are thrilled to include this amazing group of providers in our growing network of Duchenne care.”
Kinnett says that since launching the program in 2014, PPMD receives weekly inquiries from centers interested in applying for certification. “Families in our community turn to PPMD to help identify the centers in the country providing the best in comprehensive Duchenne care and services. Clinics and clinicians are realizing the value of the Certified Duchenne Care Center Program and therefore strive to be the best facility they can be for Duchenne patients and families. Industry, also, is recognizing the value of including patients in their studies, receiving standardized Duchenne care and, thus, strengthening the outcome measures in their clinical trials. As the importance of a set of standards and guidelines in clinical care are recognized globally, PPMD looks forward to expanding this program internationally in the New Year by partnering with other patient advocacy groups. We also look forward to more certifications in the U.S. in 2018.”
To learn more about PPMD’s Certified Duchenne Care Center Program, visit PPMD’s website. Click here to learn more about the history of PPMD’s Certified Duchenne Care Center Program and to access PPMD’s first published article on the program.