March 24, 2022 / Care

PPMD Announces Pediatric Certified Duchenne Care Center at Monroe Carell Jr. Children’s Hospital at Vanderbilt

Today Parent Project Muscular Dystrophy (PPMD) announced the expansion of our 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.

After pandemic restrictions inhibited additional certifications last year, we are thrilled to continue the expansion of the Certified Duchenne Care Center program and excited to mark this important moment with our 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.”

— Rachel Schrader, MS, APRN, CPNP-PC, PPMD’s Vice President of Clinical Care and Education

Javion Johnson, a patient at the Duchenne Muscular Dystrophy Clinic at Monroe Carell Jr. Children’s Hospital at Vanderbilt, holds a plaque designating the clinic as a Certified Care Center. Others featured include from left, dad Ronnie Johnson; mom, Xavier Verge; brother, J’zarion Williams; pulmonologist, Andrew Sokolow, MD; neurologist, Bryan Burnette, MD; cardiologist, Jonathan Soslow, MD and Pediatric Heart Institute staff, Kali Barbalena, Patient Care Program Coordinator, and Haleigh Southern, RN, Patient Care Coordinator.
Photo by Donn Jones, VUMC

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. 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.”

— Dr. Jonathan Soslow, Monroe Carell Jr. Children’s Hospital at Vanderbilt

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.

PPMD is thrilled to add Monroe Carell Jr. Children’s Hospital at Vanderbilt to our growing network of Certified Duchenne Care Centers and to expand the program to include our 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.”

— Rachel Schrader, MS, APRN, CPNP-PC, PPMD’s Vice President of Clinical Care and Education

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.

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