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Cited by 170Epilepsy research and treatmentFamily and Disability Support ResearchDiet and metabolism studies

The DOI matches its Crossref record; 10 of the 11 references it cites were found in a registry or an index.

Dravet syndrome and parent associations: The IDEA League experience with comorbid conditions, mortality, management, adaptation, and grief

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Skluzacek, Joan V., Watts, Kathryn P., Parsy, Olivier, Wical, Beverly, Camfield, Peter·2011·Epilepsia
DOI 10.1111/j.1528-1167.2011.03012.x
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Abstract

Summary: The advent of social networking via the Internet and the commercial availability of tests for SCN1A mutations permitted the rapid development and growth of parent‐led associations that provide advocacy and support, as well as promote education and research regarding Dravet syndrome (DS) in the last 10 years. The International Dravet syndrome Epilepsy Action League (IDEA League) is a partnership of parents and professionals united in the purpose of creating greater awareness and understanding of DS. In 2004, parents in the IDEA League support network began to collect data from families about their children with DS in order to investigate observations that, in addition to epilepsy, many of the children seemed to share similar problems. The information gained suggests comorbid conditions and raises many hypotheses for further research. The process has led to more rigorous formal studies and an increased understanding of the clinical spectrum of DS. There is an urgent need for collaborative research, comprehensive care, and professional and family education. Mortality appears high, primarily due to sudden unexplained death in epilepsy (SUDEP) and status epilepticus (SE). Most parents wish direct discussions with their child’s physician about mortality. The high risk of death and the many other stresses related to DS result in recurrent grief and loss for patients and families and highlights their need for additional advocacy and support.

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  1. Skluzacek J, 2006, Epilepsia
  2. Wical B, 2009, Epilepsia

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Metadata

Authors
Skluzacek, J. V., Watts, K. P., Parsy, O., Wical, B., & Camfield, P.
Affiliations
  • Gillette Children's Specialty Healthcare (US)
  • Dalhousie University (CA)
Corresponding author
Skluzacek, Joan V.
Venue
Epilepsia
Publisher
Wiley
Published
2011-04
Volume
52
Issue
s2
Pages
95-101
ISSN
  • 0013-9580 (ISSN-L)
  • 1528-1167
DOI
10.1111/j.1528-1167.2011.03012.x
OpenAlex
W1480442999
Cited by
170
References
11
Citations by year
2026: 7 · 2025: 10 · 2024: 22 · 2023: 15 · 2022: 9 · 2021: 17 · 2020: 16 · 2019: 11 · 2018: 11 · 2017: 14 · 2016: 9 · 2015: 8 · 2014: 6 · 2013: 9 · 2012: 6
FWCI
4.59
Type
journal article
Language
en
Open access
Licence
onlinelibrary.wiley.com/termsAndConditions#vor (vor, 3 d)
Locations
  • Epilepsia (publishedVersion)
  • PubMed (publishedVersion)
Topics
  • Health Sciences › Medicine › Clinical Neurology › Epilepsy research and treatment
  • Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
  • Health Sciences › Medicine › Physiology (medical) › Diet and metabolism studies
Keywords
Dravet syndrome, parent associations, comorbidities, mortality, sudden unexpected death in epilepsy, status epilepticus, grief, parental advocacy, SCN1A mutations, epilepsy, family support
MeSH terms
Adaptation, Psychological, Adolescent, Adult, Child, Child, Preschool, Epilepsies, Myoclonic, Female, Grief, Humans, Infant, Male, Mortality, Parent-Child Relations, Self-Help Groups, Comorbidity, Disease Management, Internationality, Young Adult

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