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Parent/caregiver perspectives of meaningful improvement in functional domains for people with CDKL5 deficiency disorder: a mixed-methods study.

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Title: Parent/caregiver perspectives of meaningful improvement in functional domains for people with CDKL5 deficiency disorder: a mixed-methods study.
Authors: Keeley J; The Kids Research Institute Australia, The University of Western Australia, P.O. Box 855, West Perth, WA, 6872, Australia. Jess.Keeley@thekids.org.au., Skoda Z; The Kids Research Institute Australia, The University of Western Australia, P.O. Box 855, West Perth, WA, 6872, Australia.; School of Psychology, Murdoch University, Perth, Australia., Utley K; International Foundation of CDKL5 Research, Wadsworth, USA., Marsh ED; Division of Neurology, Children's Hospital of Philadelphia, School of Medicine, University of Pennsylvania, Philadelphia, PA, USA., Conecker GA; International SCN8A Alliance, a Project of Decoding Developmental Epilepsies, Washington, DC, USA., Hecker J; International SCN8A Alliance, a Project of Decoding Developmental Epilepsies, Washington, DC, USA., Ludwig NN; Kennedy Krieger Institute, Center for Neuropsychological and Psychological Assessment & Johns Hopkins School of Medicine, Department of Psychiatry & Behavioral Sciences, Baltimore, MD, USA., Leonard H; The Kids Research Institute Australia, The University of Western Australia, P.O. Box 855, West Perth, WA, 6872, Australia., Saldaris J; The Kids Research Institute Australia, The University of Western Australia, P.O. Box 855, West Perth, WA, 6872, Australia., Jacoby P; The Kids Research Institute Australia, The University of Western Australia, P.O. Box 855, West Perth, WA, 6872, Australia., Pincus S; Adult & Child Center for Outcomes Research & Delivery Science/The NavLab, University of Colorado Anschutz Medical Campus, Aurora, CO, USA., Benke TA; Children's Hospital Colorado, Paediatrics and Neurology, University of Colorado School of Medicine, Aurora, CO, USA., Demarest ST; Department of Pediatrics and Neurology, School of Medicine, University of Colorado Precision Medicine Institute, Children's Hospital Colorado, Aurora, CO, USA., Downs J; The Kids Research Institute Australia, The University of Western Australia, P.O. Box 855, West Perth, WA, 6872, Australia.; Curtin School of Allied Health, Curtin University, Perth, Australia.
Source: Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation [Qual Life Res] 2025 Dec; Vol. 34 (12), pp. 3609-3620. Date of Electronic Publication: 2025 Sep 09.
Publication Type: Journal Article
Journal Info: Publisher: Springer Netherlands Country of Publication: Netherlands NLM ID: 9210257 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1573-2649 (Electronic) Linking ISSN: 09629343 NLM ISO Abbreviation: Qual Life Res Subsets: MEDLINE
Database: MEDLINE Ultimate
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  Data: Parent/caregiver perspectives of meaningful improvement in functional domains for people with CDKL5 deficiency disorder: a mixed-methods study.
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  Data: <searchLink fieldCode="AU" term="%22Keeley+J%22">Keeley J</searchLink>; The Kids Research Institute Australia, The University of Western Australia, P.O. Box 855, West Perth, WA, 6872, Australia. Jess.Keeley@thekids.org.au.<br /><searchLink fieldCode="AU" term="%22Skoda+Z%22">Skoda Z</searchLink>; The Kids Research Institute Australia, The University of Western Australia, P.O. Box 855, West Perth, WA, 6872, Australia.; School of Psychology, Murdoch University, Perth, Australia.<br /><searchLink fieldCode="AU" term="%22Utley+K%22">Utley K</searchLink>; International Foundation of CDKL5 Research, Wadsworth, USA.<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="%22Conecker+GA%22">Conecker GA</searchLink>; International SCN8A Alliance, a Project of Decoding Developmental Epilepsies, Washington, DC, USA.<br /><searchLink fieldCode="AU" term="%22Hecker+J%22">Hecker J</searchLink>; International SCN8A Alliance, a Project of Decoding Developmental Epilepsies, Washington, DC, USA.<br /><searchLink fieldCode="AU" term="%22Ludwig+NN%22">Ludwig NN</searchLink>; Kennedy Krieger Institute, Center for Neuropsychological and Psychological Assessment & Johns Hopkins School of Medicine, Department of Psychiatry & Behavioral Sciences, Baltimore, MD, USA.<br /><searchLink fieldCode="AU" term="%22Leonard+H%22">Leonard H</searchLink>; The Kids Research Institute Australia, The University of Western Australia, P.O. Box 855, West Perth, WA, 6872, Australia.<br /><searchLink fieldCode="AU" term="%22Saldaris+J%22">Saldaris J</searchLink>; The Kids Research Institute Australia, The University of Western Australia, P.O. Box 855, West Perth, WA, 6872, Australia.<br /><searchLink fieldCode="AU" term="%22Jacoby+P%22">Jacoby P</searchLink>; The Kids Research Institute Australia, The University of Western Australia, P.O. Box 855, West Perth, WA, 6872, Australia.<br /><searchLink fieldCode="AU" term="%22Pincus+S%22">Pincus S</searchLink>; Adult & Child Center for Outcomes Research & Delivery Science/The NavLab, University of Colorado Anschutz Medical Campus, Aurora, CO, USA.<br /><searchLink fieldCode="AU" term="%22Benke+TA%22">Benke TA</searchLink>; Children's Hospital Colorado, Paediatrics and Neurology, University of Colorado School of Medicine, Aurora, CO, USA.<br /><searchLink fieldCode="AU" term="%22Demarest+ST%22">Demarest ST</searchLink>; Department of Pediatrics and Neurology, School of Medicine, University of Colorado Precision Medicine Institute, Children's Hospital Colorado, Aurora, CO, USA.<br /><searchLink fieldCode="AU" term="%22Downs+J%22">Downs J</searchLink>; The Kids Research Institute Australia, The University of Western Australia, P.O. Box 855, West Perth, WA, 6872, Australia.; Curtin School of Allied Health, Curtin University, Perth, Australia.
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  Data: <searchLink fieldCode="JN" term="%229210257%22">Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation</searchLink> [Qual Life Res] 2025 Dec; Vol. 34 (12), pp. 3609-3620. <i>Date of Electronic Publication: </i>2025 Sep 09.
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  Data: <i>Publisher: </i><searchLink fieldCode="PB" term="%22Springer+Netherlands%22">Springer Netherlands </searchLink><i>Country of Publication: </i>Netherlands <i>NLM ID: </i>9210257 <i>Publication Model: </i>Print-Electronic <i>Cited Medium: </i>Internet <i>ISSN: </i>1573-2649 (Electronic) <i>Linking ISSN: </i><searchLink fieldCode="IS" term="%2209629343%22">09629343 </searchLink><i>NLM ISO Abbreviation: </i>Qual Life Res <i>Subsets: </i>MEDLINE
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        Value: 10.1007/s11136-025-04048-0
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              Text: 2025 Dec
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              Y: 2025
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