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

Formative Evaluation of Digital Health Interventions (2913) Supporting Informal Care and Caregivers (346) Electronic/Mobile Data Capture, Internet-based Survey & Research Methodology (931) Research Instruments, Questionnaires, and Tools (681)

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
Article Authors Cited by Tweetations Metrics

Sam Amin   1 , MBChB ;   Carol-Anne Partridge   2 , MSc ;   Helen Leonard   3 , MBChB ;   Jenny Downs   3 , PhD ;   Helen Allvin   4 , MSc ;   Valentine Ficara   5 , MSc ;   Emilie Pain   5 , MSc ;   Minna A Korolainen   4 , PhD

1 Department of Paediatric Neurology, Bristol Royal Hospital for Children, Bristol, United Kingdom

2 CDKL5 UK, Bristol, United Kingdom

3 The Kids Research Institute Australia, The Centre for Child Health Research, University of Western Australia, Perth, Australia

4 Orion Corporation, Orion Pharma, Espoo, Finland

5 Carenity, Paris, France

Corresponding Author:

  • Sam Amin, MBChB
  • Department of Paediatric Neurology
  • Bristol Royal Hospital for Children
  • Paediatric Neurology, Level 6, Education Centre
  • Upper Maudlin Street
  • Bristol BS 28AE
  • United Kingdom
  • Phone: 44 7886660762
  • Email: sam.amin@bristol.ac.uk