IRSF names 3 centers of excellence for Rett clinical care
Clinics in Florida, California win designation for 3 years
The International Rett Syndrome Foundation (IRSF) designated three new clinics as centers of excellence, saying they provide best-in-class clinical care for people with Rett syndrome.
The designation comes with funding support from the foundation and integration into IRSF’s Center of Excellence Network, which now has 21 clinics across the U.S. The network helps families identify specialized clinics close to them and contributes to educating physicians about the disease.
The three new clinics are Nicklaus Children’s Hospital in Miami, Rady Children’s Hospital in San Diego, and Children’s Hospital of Orange County, California. The official designation started on June 1 and is maintained for three years. Eighteen clinics had their designations renewed.
“These Centers of Excellence provide an expert-level of clinical care that allows Rett patients to thrive,” Melissa Kennedy, IRSF’s CEO, said in a foundation press release. “Seeing this network expand is essential in making treatment options and curative therapies a reality for all families living with Rett syndrome.”
Rett syndrome in most cases is caused by mutations in the MECP2 gene, which provides instructions to produce MeCP2, a protein that regulates the activity of other genes by switching them on or off. MeCP2 also plays a critical role in brain development and function.
Specialized care may be hard to access
The syndrome is associated with problems in cognitive, sensory, emotional, and motor skills, so it can profoundly affect everyday life.
Finding specialized care may be difficult, as clinics may lack healthcare professionals trained to treat the disease, and they may be far from a patient’s home. “It’s our goal that the vast majority of families affected by Rett syndrome have access to expert care within driving distance of their homes,” Kennedy said.
To be designated a center of excellence, clinics must comply with criteria established by IRSF’s Medical Advisory Board. These include having a physician director with expertise in Rett care, offering healthcare services that meet the specific needs of Rett patients, and taking part in Rett syndrome clinical trials.
Centers also need to contribute to the IRSF Rett Syndrome Registry to add to understanding of the disorder and help develop new therapies.
“We are honored to once again receive [center of excellence] designation from IRSF,” said Cary Fu, MD, director of the Rett Clinic at Vanderbilt University, one of the clinics with renewed designation. “Since our inception, our clinic has been committed to improving the quality of life for children with Rett syndrome and their families through comprehensive multidisciplinary care and clinical and translational research.”
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