(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.