. This application is to continue an ongoing community-based study of the risks and predictors of intractable epilepsy in a prospectively identified cohort of children with newly diagnosed epilepsy, recruited from offices of child neurologists in Connecticut. Information comes from medical record review, interviews and follow-up calls. The primary goals are to determine the probability and to identify predictors of intractable epilepsy and of remission. Epilepsy is a common disorder. Through the 1980's the estimated cumulative risk of childhood and adolescent epilepsy was about 1.0% with remission occurring to 70% to 80%. Despite overall high remission rates, a substantial minority, 10-20%, develop intractable epilepsy, a severe, chronic, disabling condition. There is almost no information about the risk or predictors of intractability children. This is especially important with the increasing use of epilepsy surgery in children which has occurred in the nearly complete absence of any information about prevention, prediction, and eventual remission (without surgery) of intractability. Very recent (1993-1994), population-based studies have reported 40-50% decreases in the incidence of childhood epilepsy, possibly secondary to changes in causes of epilepsy and also improvements in diagnosis with correct recognition of events that are often mistaken for, but which are not epilepsy. Consequently, what is diagnosed as epilepsy today may differ substantially from that in the past, and earlier studies may no longer be fully informative about epilepsy today. This study is unique because it has a primary focus on intractable epilepsy, and it will provide information about remission of childhood onset epilepsy at it is currently diagnosed and treated. Such information can be used to plan treatment strategies, identify high risk patients in whom aggressive approaches may be taken and who may be good candidates for clinical trials, to educate and counsel families, and to provide information to guide future research into causes, mechanisms, treatment, and ultimately even the prevention of some forms of epilepsy.

Agency
National Institute of Health (NIH)
Institute
National Institute of Neurological Disorders and Stroke (NINDS)
Type
Research Project (R01)
Project #
5R01NS031146-07
Application #
2858146
Study Section
Epidemiology and Disease Control Subcommittee 2 (EDC)
Program Officer
Jacobs, Margaret
Project Start
1993-01-15
Project End
2001-12-30
Budget Start
1999-01-01
Budget End
1999-12-31
Support Year
7
Fiscal Year
1999
Total Cost
Indirect Cost
Name
Northern Illinois University
Department
Type
Schools of Arts and Sciences
DUNS #
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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