HACKENSACK, N.J., Sept. 19, 2019 /PRNewswire/ -- Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne muscular dystrophy (Duchenne), announced the expansion of their renowned Certified Duchenne Care Center Program (CDCCP) with the program's first Adult Certified Duchenne Care Center, the clinic at University of Missouri Health Care (MU Health Care). This is an exciting next step for PPMD's CDCCP as more and more teens and adults living with Duchenne transition from pediatric care and look for quality clinicians and resources that address their needs as they age.
Kathi Kinnett, MSN, APRN, PPMD's Senior Vice President of Clinical Care and director of PPMD's Certified Duchenne Care Center Program says that the addition of adult clinic certification was a necessary next step: "Improvements in Duchenne care, specifically in the areas of cardiac and pulmonary care, have thankfully led to a growing population of adults living with Duchenne and PPMD is extraordinarily proud of the role we have played in emphasizing these areas of care. But because Duchenne has historically been a pediatric diagnosis, there is a lack of adult medical providers who are familiar with the subspecialty care and management necessary for our adult population. PPMD has certified 26 Certified Duchenne Care Centers capable of providing comprehensive care and services to pediatric Duchenne patients. Some of these certified centers are able to offer at least some aspects of care to adult patients, but none have been certified strictly as an Adult Certified Duchenne Care Center. Using the Center for Disease Control's updated Duchenne Care Considerations as a guideline, our certification committee was able to begin developing requirements for adult care leading to today's announcement of University of Missouri Health Care as our first Adult Certified Duchenne Care Center."
University of Missouri Health Care was the first center to seek certification as an adult-only CDCC. Because the needs of adults living with Duchenne are different from the needs of pediatric patients, the Certification Committee worked with Raghav Govindarajan, MD, director of MU Health Care's muscular dystrophy clinic and an assistant professor of clinical neurology at the MU School of Medicine to develop and refine requirements of adult certification. Once the requirements were developed, members of the certification committee visited the MU Health Care neuromuscular center, interviewed providers, performed a review of patient records, and visited their clinic. Throughout the experience, issues and topics pertinent to this population were discussed, requirements were edited, and suggestions included. Final review by the CDCC Certification Committee, which includes several parents and one adult living with Duchenne, recommended certification. The result is a robust application and evaluation process going forward for sites applying for Adult CDCC Certification.
"Patients with Duchenne are living longer, but most of the care and research is focused on pediatric patients," said Dr. Govindarajan. "MU Health Care is able provide older Duchenne patients the comprehensive care they deserve because of our expertise, technology and collaborative environment. We are particularly thankful to our colleagues in physical medicine and rehabilitation, cardiology, pulmonology, palliative care, endocrine and therapy services. We look forward to being a role model for other adult centers seeking certification."
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.
Kinnett says that adding centers focused on adult care broadens the reach of this 5-year-old program and believes other clinics will follow Missouri's lead: "PPMD and the CDCC Certification Committee are incredibly excited about the ability to offer this important area of care. We expect that, after the certification of the University of Missouri, many other centers will apply as well, including those centers that are providing adult care but are certified as pediatric CDCCs. Over the next few years, PPMD hopes to build a network of adult care as robust as the network of pediatric CDCCs that have been developed. Adults with Duchenne deserve this."
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 University of Missouri Health Care As part of the state's premier academic medical center, University of Missouri Health Care offers a full spectrum of care, ranging from primary care to highly specialized, multidisciplinary treatment for patients with the most severe illnesses and injuries. Patients from each of Missouri's 114 counties are served by approximately 6,000 physicians, nurses and health care professionals at MU Health Care. MU Health Care facilities include Ellis Fischel Cancer Center, the Missouri Orthopaedic Institute, the Missouri Psychiatric Center, University Hospital, and Women's and Children's Hospital in Columbia. Affiliates include Capital Region Medical Center in Jefferson City, Columbia Family Medical Group, Columbia Surgical Associates and Rusk Rehabilitation Center. MU Health Care is a founding member of the Health Network of Missouri and MPact Health. More than 50 MU Health Care outpatient clinics in central Missouri receive outpatient visits exceeding 500,000 annually. For more information, visit http://muhealth.org.