Epilepsy affects 1-2 percent of the population and is a significant source of disability in many of those affected. This application continues a community-based study begun in 1993 of 613 children with newly diagnosed epilepsy recruited from 1 6/17 child neurologists in Connecticut. Baseline data were collected through medical record review and parent interviews. Review of subsequent records and phone calls every 3 months are the main follow-up mechanisms. An important feature of this study is the incorporation of the International Classification of the Epilepsies to study prognosis with respect to syndrome (specific diagnosis) rather than symptoms and features (e.g. seizure type). The initial primary goals of identifying risk and predictors of intractable epilepsy and two-year remission and the secondary goals have been addressed. Recent information from several sources indicates that long-term outcomes may not be fully appreciated in the short-term and specifically that intractability may occur after several years of quiescence. Additional evidence indicates long-term compromised social, behavioral, and educational outcomes associated with pediatric onset epilepsy. Why this is so is not fully understood. The proposed study would continue the follow-up of this cohort to examine seizure outcomes (e.g. later onset intractability and remission and relapse) over several more years. In addition, a standardized neuropsychological and educational assessment and a MRI are planned -9 years after initial diagnosis. The MRI is specifically designed to detect hippocampal atrophy (HA) a common lesion seen in refractory focal epilepsy but which was only seen in 3/388 children in this cohort who had MRIs at diagnosis. This study will permit examination and correlation of HA with details of the epilepsy at diagnosis (e.g. history of febrile seizures, status epilepticus, seizure types) and over the course of nine years and thus provide knowledge that may ultimately help prevent some of the most extreme forms of epilepsy. The data from this study will provide valuable information that could lead to the design and targeting of a variety of interventions, including social and educational interventions and new neuroprotective measures as they become available. This in turn could help lessen the burdens associated with childhood-and adolescent-onset epilepsy for the individual, the family, and society as a whole.

Agency
National Institute of Health (NIH)
Institute
National Institute of Neurological Disorders and Stroke (NINDS)
Type
Research Project (R01)
Project #
5R01NS031146-13
Application #
6828222
Study Section
Special Emphasis Panel (ZRG1-EDC-3 (01))
Program Officer
Fureman, Brandy E
Project Start
1993-01-15
Project End
2006-12-31
Budget Start
2005-01-01
Budget End
2005-12-31
Support Year
13
Fiscal Year
2005
Total Cost
$837,361
Indirect Cost
Name
Northern Illinois University
Department
Type
Schools of Arts and Sciences
DUNS #
001745512
City
De Kalb
State
IL
Country
United States
Zip Code
60115
Berg, Anne T; Levy, Susan R; Testa, Francine M (2018) Evolution and course of early life developmental encephalopathic epilepsies: Focus on Lennox-Gastaut syndrome. Epilepsia 59:2096-2105
Baca, Christine B; Barry, Frances; Vickrey, Barbara G et al. (2017) Social outcomes of young adults with childhood-onset epilepsy: A case-sibling-control study. Epilepsia 58:781-791
Baca, Christine B; Vickrey, Barbara G; Vassar, Stefanie et al. (2015) Disease-targeted versus generic measurement of health-related quality of life in epilepsy. Qual Life Res 24:1379-87
Baldin, Elisa; Hesdorffer, Dale C; Caplan, Rochelle et al. (2015) Psychiatric disorders and suicidal behavior in neurotypical young adults with childhood-onset epilepsy. Epilepsia 56:1623-8
Callaghan, Brian; Choi, Hyunmi; Schlesinger, Malka et al. (2014) Increased mortality persists in an adult drug-resistant epilepsy prevalence cohort. J Neurol Neurosurg Psychiatry 85:1084-90
Berg, Anne T; Loddenkemper, Tobias; Baca, Christine B (2014) Diagnostic delays in children with early onset epilepsy: impact, reasons, and opportunities to improve care. Epilepsia 55:123-32
Berg, Anne T; Levy, Susan R; Testa, Francine M et al. (2014) Long-term seizure remission in childhood absence epilepsy: might initial treatment matter? Epilepsia 55:551-7
Berg, Anne T; Caplan, Rochelle; Baca, Christine B et al. (2013) Berg et al. reply. Dev Med Child Neurol 55:964-5
Frank, L Matthew; Shinnar, Shlomo; Hesdorffer, Dale C et al. (2012) Cerebrospinal fluid findings in children with fever-associated status epilepticus: results of the consequences of prolonged febrile seizures (FEBSTAT) study. J Pediatr 161:1169-71
Baca, Christine B; Vickrey, Barbara G; Vassar, Stefanie D et al. (2012) Seizure recency and quality of life in adolescents with childhood-onset epilepsy. Epilepsy Behav 23:47-51

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