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Epidemiologic, Population, and Health Outcome Studies

Since the late 1990’s, the CDC Epilepsy Program has promoted epidemiologic and related research by means of in-house data collection and analysis, funding and technical assistance to academic investigators, and collaborations with other programs within CDC and within the US Department of Health and Human Services. The following is a description of currently funded academic research projects, followed by a list of selected peer-reviewed publications describing the findings of previously supported research and surveillance projects.

Current Studies (2013)

The Incidence and Prognosis of Epilepsy in Harlem, New York City
Columbia University, New York, New York

Principal Investigator: Dale C. Hesdorffer, PhD

The purpose of this project, funded through the Prevention Research Centers, is to assess early factors that affect outcomes in a 2 year follow-up study of new-onset cases of epilepsy in the population of Harlem and Northern Manhattan, New York City. This is a prospective incidence cohort study in which newly diagnosed cases of epilepsy and unprovoked seizures will be ascertained through active surveillance of area hospitals and emergency departments. Cases will be followed for a minimum of 2 years. Potential prognostic factors will include age, seizure characteristics, socioeconomic status, burden of comorbidity, access to specialty care, and lifetime history of depression and anxiety. Outcomes will include seizure recurrence and mortality.  

This study received initial CDC funding in autumn 2009.


Epidemiologic Follow-up Study of Newly Diagnosed Epilepsy Among the Elderly
University of Arizona, Tucson, Arizona

Principal and Co-Investigators: David Labiner, MD and Jenny Chong, PhD

This study, funded through the Prevention Research Centers, is analyzing quantitative, administrative, and qualitative data to - (1) describe the public health burden of epilepsy in people in southeastern Arizona aged 65 years or older with new onset seizures, and (2) identify early factors that affect clinical outcomes and health care in this population. The effects of ethnicity and socioeconomic status will also be assessed. The study is designed as a prospective cohort study, including both incident and prevalent cases. Newly diagnosed cases of epilepsy will be ascertained in this population from multiple health care sources serving southeastern Arizona, including the Arizona Neurological Emergency Treatment Trials network (AzNETT), a regional neurology specialty group, Medicare Data, geriatric clinics and senior service providers, and others. People will be followed for 2 years or more, with follow-up interviews to assess outcomes.

This study received initial CDC funding in fall 2010.


Risk Factors of Epilepsy Outcomes: Comorbidities in Populations with Epilepsy
Medical University of South Carolina (MUSC), Charleston, South Carolina

Principal Investigator: Anbesaw W. Selassie, DrPH

The goal of this study is to examine the prevalence and patterns of common coexisting (comorbid) conditions among people with epilepsy, as well as the relation of these comorbidities with epilepsy outcomes, health care use and cost, and mortality.  The study is designed with two phases: (1) a statewide prevalence study of comorbid conditions among people with epilepsy, and (2) a retrospective cohort study of a sample of people with epilepsy compared to a sample with selected other conditions. Cases will be found and data collected from linked datasets maintained by the South Carolina Office of Research and Statistics (ORS), encompassing visits across the spectrum of health care provider sites. Additional data in Phase 2 will be abstracted and collected from the MUSC’s Comprehensive Epilepsy Center and from other medical records, with informed consent of the subjects.

This study received initial CDC funding in autumn 2011.


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Epidemiologic Research and Surveillance in Pediatric Epilepsy
RTI International, Washington, District of Columbia

Principal Investigator: Barbara Kroner, PhD

The purpose of this study is: (a) to describe the incidence and prevalence of epilepsy among children (aged 1 month to 18 years) in a racially and economically diverse population (District of Columbia); (b) to assess use of healthcare, responsiveness of health systems, and obstacles to care among children with epilepsy and their families; and (c) to characterize risk factors, outcomes and coexisting health conditions (comorbidities) related to prevalent and new-onset pediatric epilepsy. This is a prospective cohort study. Cases will be ascertained from the Children’s National Medical Center (CNMC) and Howard University Hospital, which together provide the majority of care for children with epilepsy in the District of Columbia. Data will be collected by abstracting medical records, as well as follow-up interview surveys. The period of follow-up is projected to be 2-3 years.

This study received initial CDC funding in autumn 2011.


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Publications from Epidemiologic Studies, Surveillance, and Related Projects Supported by the CDC Epilepsy Program (2002–2012)


Bambara JK, Griffith HR, Martin RC, Faught E, Wadley VG, Marson DC. Medical decision-making abilities in older adults with chronic partial epilepsy. Epilepsy Behavior. 2007;10(1):63-68.

Begley CE, Basu R, Reynolds T, Lairson DR, Dubinsky S, Newmark M, et al.  Sociodemographic disparities in epilepsy care: Results from the Houston/New York City health care use and outcomes study. Epilepsia. 2009;50(5):1040-50.

Begley C, Basu R, Lairson D, Reynolds T, Dubinsky S, Newmark M,et al. Socioeconomic status, health care use, and outcomes: persistence of disparities over time. Epilepsia. 2011; 52(5):957-64.

Benn EK, Hauser WA, Shih T, Leary L, Bagiella E, Dayan P, et al.  Estimating the incidence of first unprovoked seizure and newly diagnosed epilepsy in the low-income urban community of Northern Manhattan, New York City. Epilepsia. 2008; 49(8):1431-9.

Benn EK, Hauser WA, Shih T, Leary L, Bagiella E, Dayan P, et al. Underlying cause of death in incident unprovoked seizures in the urban community of Northern Manhattan, New York City. Epilepsia. 2009;50(10):2296-300.

Bokhour BG, Pugh MJ, Rao JK, Avetisyan R, Berlowitz DR, Kazis LE. Identifying patient-centered indicators for quality epilepsy care. Med Care Res Rev. 2009;66(2):147-166.

Brooks DR, Avetisyan R, Jarrett KM, Hanchate A, Shapiro GD, Pugh MJ, et al. Validation of self-reported epilepsy for purposes of community surveillance. Epilepsy & Behavior. 2012;23(1):57-63.

Caplin DA, Rao JK, Filloux F, Bale JF, van Orman C. Development of performance indicators for the primary care management of pediatric epilepsy: expert consensus recommendations based on the available evidence. Epilepsia. 2006;47:2011-2019.

Chong J. Kudrimoti HS. Lopez DC. Labiner DM. Behavioral risk factors among Arizonans with epilepsy: Behavioral Risk Factor Surveillance System 2005/2006. Epilepsy & Behavior. 2010;17(4):511-9.

Chong J, Hesdorffer DC, Thurman DJ, Lopez D, Harris RB, Hauser WA, Labiner ET, Velarde A, Labiner DM. The prevalence of epilepsy along the Arizona-Mexico border.  Epilepsy Res. 2013;105(1-2):206-15.

Croker C, Redelings M, Reporter R, Sorvillo F, Mascola L, et al. The Impact of Neurocysticercosis in California: A Review of Hospitalized Cases. PLOS Negl Trop Dis. 2012;6(1):e1480. 

DeGiorgio C, Pietsch-Escueta S, Tsang V, Corral-Leyva G, Ng L, Medina MT, et al. Sero-prevalence of Taenia solium cysticercosis and Taenia solium taeniasis in California, USA. Acta Neurologica Scandinavica. 2005; 111(2):84-8.

DiIorio CA, Kobau R, Holden EW, Berkowitz JM, Kamin SL, Antonak RF, et al. Developing a measure to assess attitudes toward epilepsy in the US population. Epilepsy & Behavior. 2004;5(6):965-75.

Faught E, Richman J, Martin R, Funkhouser E, Foushee R, Kratt P, et al. Incidence and prevalence of epilepsy among older U.S. Medicare beneficiaries. Neurology. 2012;78(7):448-53.

Ferguson PL, Chiprich J, Smith G, Dong B, Wannamaker BB, Kobau R, et al. Prevalence of self-reported epilepsy, health care access, and health behaviors among adults in South Carolina. Epilepsy & Behavior. 2008;13(3):529-34.

Ferguson PL, Smith GM, Wannamaker BB, Thurman DJ, Pickelsimer EE, Selassie AW. A population-based study of risk of epilepsy after hospitalization for traumatic brain injury. Epilepsia. 2010;51(5):891-8.

Handali S, Klarman M, Gaspard AN, Dong XF, Laborde R, Noh J, et al. Development and evaluation of a magnetic immunochromatographic test to detect Taenia solium, which causes taeniasis and neurocysticercosis in humans. Clin Vaccine Immunol. 2010;17(4):631-7. 

Hirtz D, Thurman DJ, Gwinn-Hardy K, Mohammed M, Chaudhuri AR, Zalutsky R. How common are the “common” neurological disorders? Neurology. 2007;68(5):326-37.

Holden EW, Grossman E, Nguyen HT, Gunter MJ, Grebosky B, Worley AV, et al. Developing a computer algorithm to identify epilepsy cases in managed care organizations. Disease Management. 2005;8(1):1-14.

Holden EW, Nguyen HT, Grossman E, Robinson S, Nelson LS, Gunter MJ, Von Worley A, Thurman DJ. Estimating prevalence, incidence, and disease-related mortality for patients with epilepsy in managed care organizations. Epilepsia. 2005;46(2):311-9.

Kelvin EA, Hesdorffer DC, Bagiella E, Andrews H, Pedley TA, Shih TT, et al. Prevalence of self-reported epilepsy in a multiracial and multiethnic community in New York City. Epilepsy Research. 2007;77(2-3):141-50.

Kobau R, Price PH. Knowledge of epilepsy and familiarity with this disorder in the U.S. population: results from the 2002 Health Styles Survey. Epilepsia. 2003;44(11):1449-1454.

Kobau R, DiIiorio CA, Price PH, Thurman DJ, Martin LM, Ridings DL, Henry TR. Prevalence of epilepsy and health status of adults with epilepsy in Georgia and Tennessee: Behavioral Risk Factor Surveillance System, 2002. Epilepsy & Behavior. 2004;5:358-366.

Kobau R, DiIorio CA, Anderson LA, Price PH. Further validation and reliability testing of the Attitudes and Beliefs about Living with Epilepsy (ABLE) components of the CDC Epilepsy Program Instrument on Stigma. Epilepsy & Behavior. 2006;8(3):552-9.

Kobau R, Gilliam F, Thurman DJ.  Prevalence of self-reported epilepsy and depression and anxiety—results from the 2004 HealthStyles Survey.  Epilepsia. 2006;47(11):1915-1921.

Kobau R, Zahran H, Grant D, Thurman DJ, Price PH, Zack MM. Prevalence of active epilepsy and health-related quality of life among adults with self-reported epilepsy in California: California Health Interview Survey, 2003.  Epilepsia. 2007;48(10):1904-13.

Kobau R, Zahran H, Thurman DJ, Zack MM, Henry TR, Schachter SC, Price PH. Epilepsy Surveillance Among Adults—19 States, Behavioral Risk Factor Surveillance System, 2005. MMWR. 2008;57(SS-6):1–24.

Kobau R, Luo Y-H, Zack MM, Helmers S, Thurman DJ. Epilepsy in Adults and Access to Care—United States, 2010. MMWR. 2012;61(45);909-13.

Kobau R, Luncheon C, Zack MM, Shegog R, Price PH. Satisfaction with life domains in people with epilepsy. Epilepsy & Behavior. 2012;25(4):546-51

Kroner BL, Fahimi M, Kenyon A, Thurman DJ, Gaillard WD.  Racial and socioeconomic disparities in epilepsy in the District of Columbia.  Epilepsy Res. 2012;103(2-3):279-87.

Leaffer EB, Jacoby A, Benn E, Hauser WA, Shih T, Dayan P, et al. Associates of stigma in an incident epilepsy population from northern Manhattan, New York City. Epilepsy & Behavior. 2011;21(1):60-4.

Lee YM, Handali S, Hancock K, Pattabhi S, Kovalenko VA, Levin A, Rodriguez S, et al. Serologic diagnosis of human Taenia solium cysticercosis by using recombinant and synthetic antigens in QuickELISATM. American Journal of Tropical Medicine & Hygiene. 2011;84(4):587-93.

Martin R, Vogtle L, Gilliam F, Faught E. Health-related quality of life in seniors: What we know from clinical trials and directions for future research. Epilepsy & Behavior. 2003;4:626-634.

Martin R, Griffith HR, Faught E, Gilliam F, Mackey M, Vogtle L. Cognitive functioning in community dwelling older adults with intractable partial epilepsy. Epilepsia. 2005;46(2):298-303.

Martin R, Vogtle L, Gilliam F, Faught E. What are the concerns of older adults living with epilepsy? Epilepsy & Behavior. 2005;7:297-300.

O'Neal S, Noh J, Wilkins P, Keene W, Lambert W, Anderson J, et al. Taenia solium tapeworm infection, Oregon, 2006–2009. Emerg Infect Dis. 2011; Accessed December 10, 2013.

Parko K, Thurman DJ. Prevalence of Epilepsy and Seizures in the Navajo Nation 1998-2002. Epilepsia. 2009;50(10):2180-5.

Perucca P, Jacoby A, Marson AG, Baker GA, Lane S, Benn EK, et al. Adverse antiepileptic drug effects in new-onset seizures: a case-control study. Neurology. 2011;76(3):273-9.

Pugh MJ, Berlowitz DR, Montouris G, Bokhour B, Cramer JA, Bohm V, et al. What constitutes high quality of care for adults with epilepsy? Neurology. 2007;69(21):2020-7.

Smith G, Ferguson PL, Saunders LL, Wagner JL, Wannamaker BB, Selassie AW.  Psychosocial factors associated with stigma in adults with epilepsy.  Epilepsy & Behavior. 2009;16(3):484-90.

Sorvillo F, Wilkins P, Shafir S, Eberhard M. Public health implications of cysticercosis acquired in the United States. Emerg Infect Dis. 2011;17(1):1-6.

Strine TW, Kobau R, Chapman DP, Thurman DJ, Price PH, Balluz L. Psychological distress, comorbidities, and health behaviors among US adults with seizures: Results from the 2002 National Health Interview Survey. Epilepsia. 2005;46(7):1133-1139. 

Thompson AW, Kobau R, Park R, Grant D. Epilepsy care and mental health care for people with epilepsy: California Health Interview Survey, 2005. Preventing Chronic Disease. 2012;9:E60.

Thurman DJ, Beghi E, Berg AT, Buchhalter JR, Ding D, Hesdorffer D, et al. Standards for epidemiologic studies and surveillance of epilepsy. Epilepsia. 2011;52 (Suppl 7):2-26.

Vogtle LK, Martin RC, Foushee HR, Faught RE. A comparison of physicians' attitudes and beliefs regarding driving for persons with epilepsy. Epilepsy Behavior. 2007;10(1)55-62.

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