The International Foundation for CDKL5 Research (IFCR) is establishing centers of excellence across the country, with each housing a multidisciplinary clinic to improve clinician familiarity with this condition and to provide a standard of care for patients and families. Such centers can better ascertain how the condition unfolds, allowing their researchers to study the natural progression of the disease.
Cleveland Clinic Children’s began the third such clinic in the United States in 2014. Patients are evaluated by multiple providers, including dedicated specialists in epilepsy, neurogenetics, genetic counseling, gastroenterology, rehabilitation medicine, orthopaedics, pulmonology, cardiology, ophthalmology, gynecology and physiotherapy. A social worker also is available.
The clinic’s patients are given personalized recommendations for treatment, tests, and therapies, and are then followed by a research coordinator throughout the year. The patient receives a comprehensive document from the Center for Excellence that can be instrumental in guiding his or her local medical, therapeutic and educational teams.
"We aim to continue IFCR’s goal of providing comprehensive multidisciplinary care for patients with CDKL5 Disorder,” said Dr. Parikh. “We will continue IFCR's vision for these centers, which is to foster physician expertise in CDKL5, and thereby work to establish diagnostic, therapeutic and preventative standards of care."
To schedule your appointment for the CDKL5 Clinic, please call 216.444.1994 and speak with someone directly in our office or contact Lisa Sanders at sanderl@ccf.org.
