Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne muscular dystrophy (Duchenne), announces the expansion of its 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 PPMD’s first certification in the state of Tennessee, according to a news release.
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.”
Provides Duchenne Care in Middle 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,” says 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.”
Parent Project Muscular Dystrophy’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.”
[Source(s): Parent Project Muscular Dystrophy, PR Newswire]
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