Rett Syndrome Clinic Headed by Vanderbilt Kennedy Center Researchers is Redesignated as International Center of Excellence

June 1, 2021

Vanderbilt University Medical Center is one of 15 institutions across the U.S. being honored with the International Rett Syndrome Foundation (IRSF)'s Center of Excellence designation or redesignation. The award recognizes the Vanderbilt Rett Syndrome Clinic's continued dedication to providing best-in-class clinical care for Rett syndrome, a rare neurological and developmental disorder.

The award comes with funding support from IRSF and membership in IRSF's Center of Excellence Network formed by the appointed clinics. The Rett Syndrome Clinic at Vanderbilt is supported by the School of Medicine and the Vanderbilt Kennedy Center (TN IDDRC, UCEDD, LEND).

"We are honored to be able to enroll our Rett Center in IRSF's network," said Jeffrey Neul, M.D., Ph.D.,director of the Vanderbilt Kennedy Center and of the Rett Syndrome Program. "And with continued leadership from Sarika Peters, Ph.D., who heads the Clinic's psychological services, and Cary Fu, M.D., who serves as medical director of the Clinic, we pledge to continue our efforts to provide outstanding care for children and adults with Rett syndrome as well as their families. We are committed to maintaining the high standards of carethat define a Center of Excellence."

To qualify as a Center of Excellence, clinics had to complete an application demonstrating how they met the following requirements established by IRSF's Medical Advisory Board:

  • A physician director with expertise in Rett syndrome care;
  • Health care services that meet the unique needs of individuals with Rett;
  • Involvement in clinical trials; and
  • Increase understanding of Rett syndrome by contributing to a clinical registry.
  • The two-year designation will officially go into effect on June 1, 2021.

"This network is part of IRSF's goal to get families the expert Rett clinical care that their loved ones need to thrive," says IRSF CEO Melissa Kennedy, "Our goal is that the vast majority of families living with Rett syndrome have access to a Rett syndrome expert by 2024."

Currently, many families must travel for an entire day to visit a physician who is knowledgeable about Rett syndrome. VUMC's involvement in the Center of Excellence network helps mitigate this situation. Its recognition as a leader in Rett syndrome care will make it the go-to clinic for local families as well as help to educate other physicians about Rett syndrome care.

There are no approved treatments for Rett syndrome, and the network's clinical trial research will play an essential role in ensuring therapeutic development progresses as quickly as possible.

"The infrastructure created by our Center of Excellence partners allows us to aggressively engage in clinical research," says IRSF CSO Dominique Pichard, M.D. "This is the only way to make treatment options and curative therapies a reality for ALL families living with Rett syndrome."