Skip to content
The Kids Research Institute Australia logo
Donate

Discover . Prevent . Cure .

No results yet

Content Validation of the Communication Inventory Disability–Observer Reported CID-OR

CDKL5 deficiency disorder is a rare and severe developmental and epileptic encephalopathy that has profound effects on communication. It is essential that communication be measured accurately for upcoming gene therapy trials. The Communication Inventory Disability-Observer Reported was developed from a framework of communication derived from parent/caregiver interview data in consultation with disability and communication experts, and after reviewing concepts in existing measures.

Citation:
Keeley J, Saldaris J, Benson-Goldberg S, Lariviere J, Leonard H, Marsh ED, ……. Jacoby P, Downs J. Content Validation of the Communication Inventory Disability–Observer Reported (CID-OR). Journal of Child Neurology. 2025.

Keywords:
CDKL5 deficiency disorder; communication measurement; content validity; developmental and epileptic encephalopathy

Abstract:
CDKL5 deficiency disorder is a rare and severe developmental and epileptic encephalopathy that has profound effects on communication. It is essential that communication be measured accurately for upcoming gene therapy trials. The Communication Inventory Disability-Observer Reported was developed from a framework of communication derived from parent/caregiver interview data in consultation with disability and communication experts, and after reviewing concepts in existing measures.