Epilepsy is a common disorder affecting 1-2% of the population. Most people with epilepsy do well; however, 10-20% develop intractable epilepsy which is uncontrolled by anticonvulsant medications. In the US this represents up to 500,000 people, about half of whom are children. Intractable epilepsy is a chronic, severely disabling disorder that not only prevents affected individuals from leading normal lives but also places tremendous burdens on their families. Increasingly, epilepsy surgery is being advocated and used for treatment of intractable epilepsy. This trend is occurring in the nearly complete absence of well-collected information about predictors of intractable epilepsy, knowledge of whether there are potentially modifiable causes on which one could intervene and potentially prevent intractable epilepsy, and information about the likelihood of intractable epilepsy eventually remitting without surgery. The proposed study is an epidemiological study of the risk and predictors of intractable epilepsy in a prospectively identified cohort of children with newly diagnosed epilepsy who will be identified through all child neurologists' offices in Connecticut and enrolled over a two-year period. Information for the study will come from medical record review, the electroencephalogram, and interviews with the parents. The primary goals of the study are to 1) determine the risk of developing intractable epilepsy in these children and 2) identify predictors of the risk of intractable epilepsy. Secondary goals of the study are to 3) identify predictors of remission in children with newly diagnosed epilepsy; 4) describe the clinical course of newly diagnosed epilepsy, 5) examine the usefulness of the International Classification of the Epilepsies in children with newly diagnosed epilepsy, and 6) to follow children with intractable epilepsy to determine the likelihood and predictors of remission of intractable epilepsy. This study represents a unique effort to identify predictors of intractable epilepsy in a prospectively identified cohort of children followed from the time of diagnosis. The results will provide valuable and unique information about intractable epilepsy in children that can be used to a) identify potentially modifiable risk factors; b) play treatment and management strategies; c) identify high risk patients in whom more aggressive treatment approaches can be taken and who might be good candidates for future clinical trials; d) educate and counsel families; and e) provide information to guide future research into the mechanisms and ultimately treatment and prevention of intractable epilepsy.

National Institute of Health (NIH)
National Institute of Neurological Disorders and Stroke (NINDS)
Research Project (R01)
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Epidemiology and Disease Control Subcommittee 2 (EDC)
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Yale University
Schools of Medicine
New Haven
United States
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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
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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
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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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