Keywords:
CDKL5 deficiency disorder; Developmental and epileptic encephalopathy; Hospitalization burden; Nonseizure hospitalizations; Seizure management
Abstract:
Information on the hospital service use among individuals with CDKL5 Deficiency Disorder, an ultrarare developmental epileptic encephalopathy, is limited, evidence of which could assist with service planning. Therefore, using baseline and longitudinal data on 379 genetically verified individuals in the International CDKL5 Disorder Database, we aimed to investigate rates of seizure-related and other hospitalizations and associated length of stay in this cohort.