Nationwide Children’s Hospital Designated Rett Syndrome Foundation Center of Excellence

October 4, 2022

(COLUMBUS, Ohio) - Nationwide Children’s Hospital has been honored today with the International Rett Syndrome Foundation (IRSF) Center of Excellence designation. Nationwide Children’s joins three new institutions designated for excellence in Rett syndrome care in the Center of Excellence Network. The designation recognizes Nationwide Children’s continued dedication to providing best-in-class clinical care for Rett syndrome, a rare neurological and developmental disorder. It comes with funding support from IRSF and membership in IRSF’s Center of Excellence Network formed by the appointed clinics.

“It is an honor to join the cohort of existing clinical institutions in IRSF’s Center of Excellence Network,” said Christopher Beatty, MD, pediatric neurologist and director of the Rett Syndrome Clinic at Nationwide Children’s. “We know that families expect high standards of care from every designated Center of Excellence. We are committed to providing best-in-class care to children and adults with Rett syndrome as we support their families.”

To qualify as an IRSF Center of Excellence, clinics must complete an application demonstrating they meet the requirements established by IRSF’s Medical Advisory Board, including having:

  • A physician director with expertise in Rett syndrome care
  • Health care services that meet the unique needs of individuals with Rett
  • Involvement in Rett syndrome clinical trials
  • An increased understanding of Rett syndrome through contributions to a clinical registry

The two-year designation is in effect as of July 1, 2022.

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

“IRSF is motivated to continue serving our Rett families by helping them identify expert Rett specialists in their region,” said IRSF Chief Executive Officer, Melissa Kennedy. “We are working diligently to make sure the majority of Rett families have access to a Rett syndrome expert no matter where they are. We are excited for Nationwide Children’s to join our Center of Excellence network and get us that much closer to this goal.”

Together, the Center of Excellence partners will expand the infrastructure to support enhanced clinical research for Rett syndrome. This work is essential as there are no approved treatments for Rett syndrome. The network’s clinical trial research will play an essential role in ensuring therapeutic development progresses as quickly as possible.

About International Rett Syndrome Foundation
The International Rett Syndrome Foundation (IRSF) is the leading research and empowerment organization for Rett syndrome. Investing over $54 million in research that has advanced therapeutics to clinical trials, including Rett syndrome’s first-ever phase 3 clinical trial. IRSF’s vision is to create a world without Rett syndrome and we are reaching that vision through developing a robust pipeline of treatments and empowering families with information, knowledge and connectivity. Further information can be found at: www.rettsyndrome.org.

About Nationwide Children's Hospital

Named to the Top 10 Honor Roll on U.S. News & World Report’s 2021-22 list of “Best Children’s Hospitals,” Nationwide Children’s Hospital is one of America’s largest not-for-profit free-standing pediatric health care systems providing unique expertise in pediatric population health, behavioral health, genomics and health equity as the next frontiers in pediatric medicine, leading to best outcomes for the health of the whole child. Integrated clinical and research programs, as well as prioritizing quality and safety, are part of what allows Nationwide Children’s to advance its unique model of care. Nationwide Children’s has a staff of more than 13,000 that provides state-of-the-art wellness, preventive and rehabilitative care and diagnostic treatment during more than 1.6 million patient visits annually. As home to the Department of Pediatrics of The Ohio State University College of Medicine, Nationwide Children’s physicians train the next generation of pediatricians and pediatric specialists. The Abigail Wexner Research Institute at Nationwide Children’s Hospital is one of the Top 10 National Institutes of Health-funded free-standing pediatric research facilities. More information is available at NationwideChildrens.org.