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

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Bibliographic Details
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
Description
ISSN:1573-2649
DOI:10.1007/s11136-025-04048-0