Development and initial validation of the Communication Inventory Disability – Observer Reported (CID-OR): a measure of communication in CDKL5 deficiency disorder

Abstract Background CDKL5 Deficiency Disorder (CDD) is a rare neurodevelopmental disorder characterised by early onset seizures combined with complex healthcare needs and developmental impairment that influence functional domains including communication. Communication is a high priority domain for f...

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Auteurs principaux:	Jenny Downs, Jessica Keeley, Peter Jacoby, Sofia Benson-Goldberg, Sarah Pillar, Andrea Miele, Helen Leonard, Jacinta Saldaris, Eric D. Marsh, Tim A. Benke, Scott T. Demarest
Format:	Artigo
Langue:	Inglês
Publié:	SpringerOpen 2025-12-01
Collection:	Journal of Patient-Reported Outcomes
Sujets:	CDKL5 deficiency disorder Developmental and epileptic encephalopathy Communication Outcome measure Psychometric
Accès en ligne:	https://doi.org/10.1186/s41687-025-00977-z
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