Evidence map›Paper›PMID 40900005›Full record

ArticleJournal of child neurology2026

Content Validation of the Communication Inventory Disability-Observer Reported (CID-OR).

Jessica Keeley, Jacinta Saldaris, Sofia Benson-Goldberg, Judy Lariviere, Helen Leonard, Eric D Marsh, Scott T Demarest, Tim A Benke, Peter Jacoby, Jenny Downs

Abstract readValidation Study
PubMed Full text at PMC Publisher
In one paragraph

Article in Journal of child neurology, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

10 authors.

Jessica KeeleyChild Disability, The Kids Research Institute Australia, Perth, Western Australia, Australia.ORCID 0000-0001-9613-4713
Jacinta SaldarisChild Disability, The Kids Research Institute Australia, Perth, Western Australia, Australia.
Sofia Benson-GoldbergSpecial Education and Clinical Sciences Department, College of Education, University of Oregon, Eugene, OR, USA.ORCID 0000-0002-7166-8150
Judy LariviereAssistive Tech 4 ALL, Inc, Rancho Cordova, CA, USA.
Helen LeonardChild Disability, The Kids Research Institute Australia, Perth, Western Australia, Australia.ORCID 0000-0001-6405-5834
Eric D MarshDivision of Neurology, Children's Hospital of Philadelphia, School of Medicine, University of Pennsylvania, PA, Pennsylvania, USA.
Scott T DemarestDepartment of Pediatrics and Neurology, School of Medicine, University of Colorado Precision Medicine Institute, Children's Hospital of Colorado, Aurora, CO, USA.ORCID 0000-0002-4544-3724
Tim A BenkeDepartments of Pediatrics and Neurology, University of Colorado School of Medicine, and Children's Hospital of Colorado, Aurora, CO, USA.ORCID 0000-0002-6969-5061
Peter JacobyChild Disability, The Kids Research Institute Australia, Perth, Western Australia, Australia.
Jenny DownsChild Disability, The Kids Research Institute Australia, Perth, Western Australia, Australia.ORCID 0000-0001-7358-9037

Funding

Multi-Site Validation of Biomarkers and Core Clinical Outcome Measures for Clinical Trials Readiness in CDKL5 Deficiency DisorderU01NS114312 · NINDS · UNIVERSITY OF COLORADO DENVER · PI BENKE, TIMOTHY A, DOWNS, JENNY · 2021 to 2025
$4.7M
NINDS NIH HHS U01 NS114312
6 · The paper itself

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 (CID-OR) was developed from a framework of communication derived from parent/caregiver interview data (n = 23), in consultation with disability and communication experts, and after reviewing concepts in existing measures. In this study, parents and caregivers (n = 21) took part in 1-hour semistructured think-aloud online interviews. A directed content analysis was conducted using both deductive and inductive coding. Findings suggest that CID-OR was comprehensive, comprehensible, and relevant. Multiple small adjustments were made to improve clarity and representativeness and reduce caregiver burden based on feedback in the data. This content validity study is an important element in the process of developing an effective measure of communication of people with CDKL5 deficiency disorder.

Indexed as

CommunicationCommunication DisordersDisability EvaluationEpileptic SyndromesSpasms, InfantileAdolescentAdultCaregiversChildChild, PreschoolFemaleHumansMaleParentsReproducibility of ResultsCDKL5 deficiency disordercommunication measurementcontent validitydevelopmental and epileptic encephalopathy

Identifiers

PMID40900005
PMCPMC12484243

What OpenQuestion holds

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Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.