Vanderbilt's Duchenne Clinic first in Tennessee to be certified

Javion Johnson, a patient at Children’s Hospital’s Duchenne Muscular Dystrophy Clinic, holds a plaque designating the clinic as a Certified Care Center. Others on hand include from left, his father Ronnie Johnson, mother, Xavier Verge, brother, J’zarion Williams, Andrew Sokolow, MD, Bryan Burnette, MD, Jonathan Soslow, MD, Kali Barbalena and Haleigh Southern, RN. (photo by Donn Jones)

The Duchenne Muscular Dystrophy Clinic at Monroe Carell Jr. Children’s Hospital at Vanderbilt was recently recognized as a Certified Duchenne Care Center Program by the Parent Project Muscular Dystrophy (PPMD).

PPMD, a nonprofit organization founded in 1994, is focused on ending Duchenne, the most common fatal, genetic childhood disorder that affects approximately 1 out of every 3,500 boys worldwide each year. There is no cure.

Children’s Hospital, the largest provider of Duchenne care in the region and the only one in Tennessee, joins 28 accredited centers in the United States providing standardized care and services.

“There has been some form of a center for Duchenne at Vanderbilt since the late 1960s,” said Bryan Burnette, MD, MS, associate professor of Neurology and Neuromuscular Medicine at Children’s Hospital. “In the last few years, we have concentrated on developing a multidisciplinary clinic with great attention to the patient experience and care in one physical location.

“We recognize the importance of standardized care and collaborative research efforts to provide the best care not only for our patients, but Duchenne patients across the globe.”

The recent PPMD accreditation allows Children’s Hospital access to major clinical trials, cutting-edge treatments and a community of support. PPMD advocacy efforts have garnered hundreds of millions of dollars in funding for research and treatment development and secured five FDA approvals for drug therapies.

Rachel Schrader, MS, APRN, CPNP-PC, vice president of clinical care and education and director of PPMD, said adding Children’s Hospital to the network of Certified Duchenne Care Centers will expand care for the Southeast region.

“The team at Children’s Hospital has shown immense dedication to Duchenne care,” said Schrader. “The multidisciplinary center was launched in 2019 bringing together comprehensive care for patients in central Tennessee and beyond. We look forward to working with them on clinical care and research endeavors for years to come.”

The clinic, led by three co-directors, Burnette, Andrew Sokolow, MD, assistant professor of Pediatric Allergy, Immunology and Pulmonology, and Jonathan Soslow, MD, associate professor of Pediatric Cardiology, draws patients from Kentucky, Alabama, Georgia, Louisiana, Mississippi, South Carolina and Missouri.

The clinic also incorporates teams from palliative care, nutrition, physical and occupational therapy and social work for a one-stop shop collaboration. Other specialties that work closely with the clinic include speech therapy, endocrinology, gastroenterology, orthopaedics and surgery.

“Having one single clinic offers a great advantage to both our patients and our medical teams,” said Soslow. “We are able to communicate in real time about issues that have been identified. It helps that we collaborate in the moment for evidence-based care planning.

“Being able to think about our patients from a multidisciplinary standpoint improves care significantly; instead of focusing just on the heart, or just on the lungs, providers can discuss how various treatments will affect the entire patient, allowing for more effective and individualized care,” Soslow said.