Parent Project Muscular Dystrophy Announces Pediatric Certified Duchenne Care Center at Monroe Carell Jr. Children's Hospital at Vanderbilt

News provided by

Parent Project Muscular Dystrophy (PPMD)

Mar 24, 2022, 10:00 ET

Leading Duchenne Organization Expands Certification of Clinics that Provide Optimal Care for People with Duchenne Muscular Dystrophy with 1st Clinic in Tennessee

WASHINGTON, March 24, 2022 /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 certification of the clinic at Monroe Carell Jr. Children's Hospital at Vanderbilt in Nashville, Tennessee. This is an exciting step for the CDCCP as it is the first certification in the state of Tennessee.

Rachel Schrader, MS, APRN, CPNP-PC, PPMD's Vice President of Clinical Care and Education and Director of the CDCCP, notes that the certification is an important step in bringing standardized Duchenne care to Tennessee and the greater region. "The team at the Duchenne Muscular Dystrophy Clinic at Children's Hospital at Vanderbilt has shown immense dedication to Duchenne care and growth in their Duchenne program over the last two years. This certification comes after significant changes to the program's structure since its new multi-disciplinary clinic was launched in 2019, bringing together comprehensive care for patients with Duchenne and Becker in central Tennessee and beyond."

The Duchenne Muscular Dystrophy Clinic at Children's Hospital at Vanderbilt is the largest provider of Duchenne care in middle Tennessee and serves a population of over 100 patients living with the disorder, which is caused by changes in the dystrophin gene. The center serves patients in Tennessee, northern Alabama, southern Kentucky, and sees patients traveling as far as South Carolina, Georgia, Louisiana, and Missouri.

Led by its three co-directors, Dr. Jonathan Soslow (cardiology), Dr. Bryan Burnette (neurology) and Dr. Andrew Sokolow (pulmonary), the team at Children's Hospital at Vanderbilt is actively engaged in both the continued growth and development of its Duchenne program, and in a variety of clinical trial opportunities for its patients. Additionally, the clinic's recently implemented Community Advisory Board has lent the clinic the ability to incorporate the patient voice into the clinic's strategic planning and care offerings, ensuring comprehensive, quality care.

"Certification from PPMD is a significant honor and recognizes the substantial amount of effort from every member of the clinic to improve the care of boys and young men with dystrophinopathy in middle Tennessee," said Dr. Soslow. "The team is thrilled to be certified and looks forward to enhancing care provided by the clinic and to working with PPMD to end Duchenne."

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's Care Considerations. As part of its ongoing mission to end Duchenne, PPMD continues to insist that all people with Duchenne receive comprehensive care.

Schrader is thrilled to add Monroe Carell Jr. Children's Hospital at Vanderbilt to the growing network of Certified Duchenne Care Centers and to expand the program to include its first center in the state of Tennessee. "PPMD and the CDCC Certification Committee are truly impressed with the team's progress to create and streamline their Duchenne clinic. It is evident they are committed to families with Duchenne and Becker, and we look forward to working with them on clinical care and research endeavors for years to come."

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) fights every single battle necessary to end Duchenne.

We demand optimal care standards and ensure every family has access to expert healthcare providers, cutting edge treatments, and a community of support. We invest deeply in treatments for this generation of Duchenne patients and in research that will benefit future generations. Our advocacy efforts have secured hundreds of millions of dollars in funding and won five FDA approvals.

Everything we do—and everything we have done since our founding in 1994—helps those with Duchenne live longer, stronger lives. We will not rest until we end Duchenne for every single person affected by the disease. Join our fight against Duchenne at EndDuchenne.org. Follow PPMD on Facebook, Twitter, Instagram, and YouTube.

ABOUT MONROE CARELL JR. CHILDREN'S HOSPITAL AT VANDERBILT

Monroe Carell Jr. Children's Hospital at Vanderbilt is one of the nation's leading children's hospitals, treating and helping to prevent a full range of pediatric health issues from colds and broken bones to complex heart diseases and cancer. Achieving 10 out of 10 nationally ranked pediatric specialties in 2021, Children's Hospital was again named among the nation's "Best Children's Hospitals" for the 15^th consecutive year by U.S. News & World Report. Additionally, Children's Hospital earned the distinction as the No. 1 pediatric hospital in Tennessee, and in a new regional ranking, sharing first place in the Southeast Region.

Monroe Carell Jr. Children's Hospital at Vanderbilt, a nonprofit organization, opened in 2004, expanded its physical space in 2012, and recently added four new floors encompassing 160,000 total sq. ft. The new expansion helps to advance the size and scope of the hospital's mission. For more about Monroe Carell Jr. Children's Hospital at Vanderbilt: ChildrensHospitalVanderbilt.org

SOURCE Parent Project Muscular Dystrophy (PPMD)