This paper is in the following e-collection/theme issue:

Formative Evaluation of Digital Health Interventions (3272) Supporting Informal Care and Caregivers (381) Electronic/Mobile Data Capture, Internet-based Survey & Research Methodology (1001) Research Instruments, Questionnaires, and Tools (742)

Published on in Vol 9 (2025)

This is a member publication of University of Bristol (Jisc)

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/72489, first published .
Caregivers’ Perceptions of Clinical Symptoms, Disease Management, and Quality of Life Impact in Cases of Cyclin-Dependent Kinase-Like 5 Deficiency Disorder: Cross-Sectional Online Survey

Caregivers’ Perceptions of Clinical Symptoms, Disease Management, and Quality of Life Impact in Cases of Cyclin-Dependent Kinase-Like 5 Deficiency Disorder: Cross-Sectional Online Survey

Caregivers’ Perceptions of Clinical Symptoms, Disease Management, and Quality of Life Impact in Cases of Cyclin-Dependent Kinase-Like 5 Deficiency Disorder: Cross-Sectional Online Survey

Authors of this article:

Sam Amin1 Author Orcid Image ;   Carol-Anne Partridge2 Author Orcid Image ;   Helen Leonard3 Author Orcid Image ;   Jenny Downs3 Author Orcid Image ;   Helen Allvin4 Author Orcid Image ;   Valentine Ficara5 Author Orcid Image ;   Emilie Pain5 Author Orcid Image ;   Minna A Korolainen4 Author Orcid Image
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Journals

  1. Shah D, Jacoby P, Doll H, Do H, Andrews J, Romero H, Gibson G, Downs J. Psychometric validation of the quality of life Inventory − Disability (QI-Disability) among patients with Lennox-Gastaut syndrome and Dravet syndrome. Epilepsy & Behavior 2026;175:110840 View