Nicklaus Children’s Hospital’s Rett Syndrome Clinic has been recognized as a Center of Excellence by the International Rett Syndrome Foundation (IRSF), making it one of 21 centers of excellence in the nation and the only treatment center in Florida for children with these complex care needs. IRSF’s Center of Excellence network helps to identify comprehensive care clinics for families and educate other physicians about Rett syndrome care, a rare and complex neurodevelopmental condition that affects up to 9,000 Americans each year.
The designation provides funding and support from the IRSF and integration into the IRSF’s Center of Excellence Network. Since 2008, Nicklaus Children’s Hospital’s Brain Institute has been ranked among the nation’s best for pediatric neurology and neurosurgery by U.S. News & World Report. The institute is recognized internationally for its multidisciplinary care offerings for children with complex neurodevelopmental and for conditions like Rett Syndrome that bring together clinicians from an array of pediatric specialties to provide care to each child, in a coordinated setting.
“It is an honor to receive COE designation from IRSF,” says Dr. Paula Padua Schleifer, Co-medical director of the Nicklaus Children’s Hospital Brain Institute and medical director of the neurogenetics program. “Our brain institute is dedicated to providing compassionate care along with the latest in assessment and treatment to each one of our patients in order to ensure the very best quality of life for them.”
To achieve the Center of Excellence designation, clinics must demonstrate compliance with criteria established by IRSF’s Medical Advisory Board, including:
- Maintaining a physician director with expertise in Rett syndrome care
- Providing healthcare services that meet the unique needs of individuals with Rett
- Participating in Rett syndrome clinical trials
- Contributing to the IRSF Rett Syndrome Registry to increase understanding of the disorder and support drug development