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

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 families but currently used measures demonstrate floor effects. 

Citation:
Downs J, Keeley J, Jacoby P, Benson-Goldberg S, Pillar S, Miele A, Leonard H, Saldaris J, Marsh ED, Benke TA, Demarest ST. Development and initial validation of the Communication Inventory Disability – Observer Reported (CID-OR): a measure of communication in CDKL5 deficiency disorder. J Patient Rep Outcomes. 2026;10(1).

Keywords:
CDKL5 deficiency disorder; Communication; Developmental and epileptic encephalopathy; Outcome measure; Psychometric

Abstract:
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 families but currently used measures demonstrate floor effects.