Parent Project Muscular Dystrophy Designates Children's Hospital of Wisconsin a Certified Duchenne Care Center
HACKENSACK, N.J., /PRNewswire/ -- Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne muscular dystrophy (Duchenne), named the Neuromuscular Disorders Program at Children's Hospital of Wisconsin to be the 21st clinic to be named a Certified Duchenne Care Center, a designation created in 2014 as part of the organization's Certified Duchenne Care Center Program.
Duchenne is the most common fatal genetic disorder diagnosed in childhood, affecting approximately one in 5,000 live male births.
PPMD's Certified Duchenne Care Center Program supports standardized, comprehensive care and services for all people living with Duchenne. 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.
About Parent Project Muscular Dystrophy
Duchenne is a fatal genetic disorder that slowly robs people 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 people 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 people with Duchenne live longer, stronger lives. We will not rest until every person 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. Follow PPMD on Facebook, Twitter, and YouTube.
About Children's Hospital of Wisconsin
Children's Hospital of Wisconsin is the region's only independent health care system dedicated solely to the health and well-being of children. The hospital, with locations in Milwaukee and Neenah, Wisconsin, is recognized as one of the leading pediatric health care centers in the United States. It is ranked in eight specialty areas in U.S. News & World Report's 2018-19 Best Children's Hospitals report. Children's provides primary care, specialty care, urgent care, emergency care, community health services, foster and adoption services, child and family counseling, child advocacy services and family resource centers. In 2017, Children's invested nearly $103 million in the community to improve the health status of children through medical care, advocacy, education and pediatric medical research. Children's achieves its mission in part through donations from individuals, corporations and foundations and is proud to be a member of Children's Miracle Network Hospitals. For more information, visit the website at chw.org.
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SOURCE Parent Project Muscular Dystrophy