HACKENSACK, N.J., Nov. 1, 2018 /PRNewswire/ — Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne muscular dystrophy (Duchenne), named Children's National Health System the 20th 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.
Led by clinic directors Drs. Mathula Thangarajh (Neurology) and Sally Evans (PM&R), the Pediatric Neuromuscular Disorders Program at Children's National Health System specializes in the diagnosis, treatment, and research of many neuromuscular diseases, including Duchenne.
“We are grateful to Parent Project Muscular Dystrophy for this recognition. Gaining this certification underscores the high standards of our program and of Children's National” says Sally Evans, M.D., Division Chief, Pediatric Rehabilitation Medicine. “It lets patients and specialists know to expect the best level of care from our hard-working, passionate team at Children's National.”
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 Children's National Health System will now be included in the growing network of Duchenne care offered at the 20 Certified Duchenne Care Centers across the US. “The Children's National team has recently undergone many changes. They have worked with PPMD and the Duchenne community every step of the way to ensure that these changes have enhanced the care and services afforded to their families. They have also worked extremely hard to communicate those enhancements to the community, getting feedback which will allow continuous quality improvement for this center and for the Duchenne families engaged with this center. This is an amazing team of experienced, compassionate individuals. We could not be more proud to include them in the CDCC network.”
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 National Health System
Children's National Health System, based in Washington, D.C., has served the nation's children since 1870. Children's National is one of the nation's Top 5 pediatric hospitals and, for a second straight year, is ranked No. 1 in newborn care, as well as ranked in all specialties evaluated by U.S. News & World Report. It has been designated two times as a Magnet® hospital, a designation given to hospitals that demonstrate the highest standards of nursing and patient care delivery. This pediatric academic health system offers expert care through a convenient, community-based primary care network and specialty outpatient centers in the D.C. Metropolitan area, including the Maryland suburbs and Northern Virginia. Home to the Children's Research Institute and the Sheikh Zayed Institute for Pediatric Surgical Innovation, Children's National is the seventh-highest NIH-funded pediatric institution in the nation. Children's National is recognized for its expertise and innovation in pediatric care and as a strong voice for children through advocacy at the local, regional and national levels.
SOURCE Parent Project Muscular Dystrophy