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This study aimed to identify the quality of life (QOL) domains important for individuals with CDD. Twenty\u2010five parents of individuals registered in the International CDKL5 Disorder Database participated in semi\u2010structured telephone interviews to explore areas that supported or challenged their child's QOL. Rett syndrome (RTT) is another severe genetically\u2010caused neurodevelopmental disorder but is generally less severe than CDD. Qualitative data were analysed using directed content analysis, based on previously identified QOL domains for RTT that related to health and wellbeing, daily activities and community immersion and services. Each of the domains identified for RTT was represented in the CDD dataset overall and when the dataset was divided into three age groups: 3\u20135 years old; 6\u201318\u2009years old; and older than 18\u2009years. This is the first study to conceptualise factors important for individuals with CDD. 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