CDLK5 Centers of Excellence

This source is providing infrastructure support for the establishment of a CDKL5 Center of Excellence focused on providing specialized care to individuals affected by this genetic disorder, as well as collecting longitudinal neurobehavioral and other medical data. The Center will also participate in a variety of research projects sponsored by the International Foundation for CDKL5 Research (IFCR). Because epilepsy is the most prominent feature of CDKL5 disorders, the planned CDKL5 clinic is based in the Boston Children’s Hospital Epilepsy Division and headed by Dr. Olson, an epileptologist with special expertise in neurogenetics, exome sequencing in MECP2 mutation negative patients with features of Rett syndrome, and use of experimental agents in children with infantile spasms.