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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.

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Title: Development and initial validation of the Communication Inventory Disability - Observer Reported (CID-OR): a measure of communication in CDKL5 deficiency disorder.
Authors: Downs J; The Kids Research Institute Australia, University of Western Australia, Perth, WA, Australia. Jenny.Downs@thekids.org.au.; Curtin School of Allied Health, Faculty of Health Sciences, Curtin University, Perth, WA, Australia. Jenny.Downs@thekids.org.au., Keeley J; The Kids Research Institute Australia, University of Western Australia, Perth, WA, Australia., Jacoby P; The Kids Research Institute Australia, University of Western Australia, Perth, WA, Australia., Benson-Goldberg S; Special Education and Clinical Sciences Department, College of Education, University of Oregon, Eugene, OR, USA., Pillar S; The Kids Research Institute Australia, University of Western Australia, Perth, WA, Australia., Miele A; Department of Pediatrics and Neurology, University of Colorado School of Medicine, Precision Medicine Institute, Children's Hospital Colorado, Aurora, CO, USA., Leonard H; The Kids Research Institute Australia, University of Western Australia, Perth, WA, Australia., Saldaris J; The Kids Research Institute Australia, University of Western Australia, Perth, WA, Australia., Marsh ED; Division of Neurology, Children's Hospital of Philadelphia, School of Medicine, University of Pennsylvania, Philadelphia, PA, USA., Benke TA; Department of Pediatrics and Neurology, University of Colorado School of Medicine, Children's Hospital Colorado, Aurora, CO, USA., Demarest ST; Department of Pediatrics and Neurology, University of Colorado School of Medicine, Precision Medicine Institute, Children's Hospital Colorado, Aurora, CO, USA.
Source: Journal of patient-reported outcomes [J Patient Rep Outcomes] 2025 Dec 09; Vol. 10 (1), pp. 6. Date of Electronic Publication: 2025 Dec 09.
Publication Type: Journal Article; Validation Study
Journal Info: Publisher: Springer International Publishing Country of Publication: Germany NLM ID: 101722688 Publication Model: Electronic Cited Medium: Internet ISSN: 2509-8020 (Electronic) Linking ISSN: 25098020 NLM ISO Abbreviation: J Patient Rep Outcomes Subsets: MEDLINE
Database: MEDLINE Ultimate
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  Data: Development and initial validation of the Communication Inventory Disability - Observer Reported (CID-OR): a measure of communication in CDKL5 deficiency disorder.
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  Data: <searchLink fieldCode="AU" term="%22Downs+J%22">Downs J</searchLink>; The Kids Research Institute Australia, University of Western Australia, Perth, WA, Australia. Jenny.Downs@thekids.org.au.; Curtin School of Allied Health, Faculty of Health Sciences, Curtin University, Perth, WA, Australia. Jenny.Downs@thekids.org.au.<br /><searchLink fieldCode="AU" term="%22Keeley+J%22">Keeley J</searchLink>; The Kids Research Institute Australia, University of Western Australia, Perth, WA, Australia.<br /><searchLink fieldCode="AU" term="%22Jacoby+P%22">Jacoby P</searchLink>; The Kids Research Institute Australia, University of Western Australia, Perth, WA, Australia.<br /><searchLink fieldCode="AU" term="%22Benson-Goldberg+S%22">Benson-Goldberg S</searchLink>; Special Education and Clinical Sciences Department, College of Education, University of Oregon, Eugene, OR, USA.<br /><searchLink fieldCode="AU" term="%22Pillar+S%22">Pillar S</searchLink>; The Kids Research Institute Australia, University of Western Australia, Perth, WA, Australia.<br /><searchLink fieldCode="AU" term="%22Miele+A%22">Miele A</searchLink>; Department of Pediatrics and Neurology, University of Colorado School of Medicine, Precision Medicine Institute, Children's Hospital Colorado, Aurora, CO, USA.<br /><searchLink fieldCode="AU" term="%22Leonard+H%22">Leonard H</searchLink>; The Kids Research Institute Australia, University of Western Australia, Perth, WA, Australia.<br /><searchLink fieldCode="AU" term="%22Saldaris+J%22">Saldaris J</searchLink>; The Kids Research Institute Australia, University of Western Australia, Perth, WA, Australia.<br /><searchLink fieldCode="AU" term="%22Marsh+ED%22">Marsh ED</searchLink>; Division of Neurology, Children's Hospital of Philadelphia, School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.<br /><searchLink fieldCode="AU" term="%22Benke+TA%22">Benke TA</searchLink>; Department of Pediatrics and Neurology, University of Colorado School of Medicine, Children's Hospital Colorado, Aurora, CO, USA.<br /><searchLink fieldCode="AU" term="%22Demarest+ST%22">Demarest ST</searchLink>; Department of Pediatrics and Neurology, University of Colorado School of Medicine, Precision Medicine Institute, Children's Hospital Colorado, Aurora, CO, USA.
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  Data: <searchLink fieldCode="JN" term="%22101722688%22">Journal of patient-reported outcomes</searchLink> [J Patient Rep Outcomes] 2025 Dec 09; Vol. 10 (1), pp. 6. <i>Date of Electronic Publication: </i>2025 Dec 09.
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  Data: <i>Publisher: </i><searchLink fieldCode="PB" term="%22Springer+International+Publishing%22">Springer International Publishing </searchLink><i>Country of Publication: </i>Germany <i>NLM ID: </i>101722688 <i>Publication Model: </i>Electronic <i>Cited Medium: </i>Internet <i>ISSN: </i>2509-8020 (Electronic) <i>Linking ISSN: </i><searchLink fieldCode="IS" term="%2225098020%22">25098020 </searchLink><i>NLM ISO Abbreviation: </i>J Patient Rep Outcomes <i>Subsets: </i>MEDLINE
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              Text: 2025 Dec 09
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