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Surveillance, Epidemiologic Study Methodology, Other

Patient Identification Algorithm: Estimating Prevalence, Incidence, and Mortality of Epilepsy Using Administrative Health Data in a Managed Care Organization
Principal Investigator: E. Wayne Holden, PhD
ORC Macro, Atlanta, GA
Co-investigator: Margaret J. Gunter, PhD
Lovelace Clinic Foundation, Albuquerque, NM

Purpose: to develop and validate methods to study epilepsy incidence and prevalence in populations, using ICD-9-CM-coded computerized, linked inpatient and outpatient health care data.


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.

Holden EW, Grossman E, Nguyen HT, Gunter MJ, Grebosky B, Worley AV, Nelson L, Robinson S, Thurman DJ. Developing a computer algorithm to identify epilepsy cases in managed care organizations. Disease Management 2005; 8(1):1–14.

The Measurement of Public Attitudes Toward Epilepsy
Principal Investigator: Colleen A DiIorio, PhD
Emory University, Atlanta GA

Purpose: to develop an instrument to measure the U.S. public's attitudes (including stigmatizing attitudes) toward people with epilepsy and to assess the reliability and validity of the instrument.


DiIorio CA, Kobau R, Holden EW, Berkowitz JM, Kamin SL, Antonak RF, Austin JK, Baker GA, Bauman LJ, Gilliam F, Thurman DJ, Price PH. Developing a measure to assess attitudes toward epilepsy in the US population. Epilepsy & Behavior 2004; 5(6):965–75.

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.

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Examining the Validity of Community-Based Screening Questions for Assessing Epilepsy
Principal Investigator: Lewis Kazis, ScD
Boston University School of Public Health, Boston, MA

Purpose: to assess the validity of the set of five epilepsy-related survey questions developed by the CDC Epilepsy Program for use in the Behavior Risk Factor Surveillance System.

Report: (Submitted for publication)

Behavioral Risk Factor Surveillance System: Epilepsy in Adult Populations
Contact: Rosemarie Kobau, MPH
CDC National Center for Chronic Disease Prevention and Health Promotion, Atlanta, GA

Purpose: to screen for the prevalence of epilepsy in the populations of selected states, and to assess associated health-related behaviors, health care utilization, health-related quality of life, comorbidities, and other outcomes.


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 Morbidity and Mortality Weekly Report 2008; 57 (SS-6):1–24.

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Screening High-risk U.S. Populations for Cysticercosis and Taeniasis
Principal investigators: Victor C. Tsang, PhD and Patricia P. Wilkins, PhD
CDC National Center for Zoonotic, Vector-Borne, & Enteric Diseases, Atlanta, GA

Purpose: to determine the prevalence of Taenia solium infection (a cause of epilepsy) in selected populations and to promote prevention interventions.


DeGiorgio C, Pietsch-Escueta S, Tsang V, Corral-Leyva G, Ng L, Medina MT, Astudillo S, Padilla N, Leyva P, Martinez L, Noh J, Levine M, del Villasenor R, Sorvillo F, Sero-prevalence of Taenia solium cysticercosis and Taenia solium taeniasis in California, USA. Acta Neurologica Scandinavica 2005; 111(2):84–8.

Developing sensitive, specific, and economical assays to detect neurocysticercosis and taeniasis
Principal investigators: Victor C. Tsang, PhD and Patricia P. Wilkins, PhD
Center for Global Health, Division of Parasitic Diseases and Malaria, Atlanta, GA

Purpose: to develop serologic tests to identify people with cysticercosis and taeniasis that can be easily and economically employed throughout the world. Detecting cysticercosis condition (caused by the pork tapeworm, Taenia solium) is important to prevent a common cause of epilepsy in many developing countries and some U.S. immigrant populations.


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 free access

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. abstract

Handali S, Klarman M, Gaspard AN, Dong XF, Laborde R 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. abstract

Lee YM, Handali S, Hancock K, Pattabhi S, Kovalenko VA, Levin A, Rodriguez S, Lin S, Scheel CM, Gonzalez AE, Gilman RH, Garcia HH, Tsang VC. 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.

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 [serial on the Internet]. 2011 Jun [date cited].

Cognitive Testing of Epilepsy Questions for use on Population-Based Surveys such as BRFSS and CHIS
Principal Investigator: David Grant, PhD
University of California at Los Angeles, Los Angeles, CA

Purpose: to test questions on healthcare access and use and on cognition in adults with epilepsy prior to including the questions on population-based surveys. Questions will be tested in English and in Spanish in community dwelling adults with epilepsy.

Publication: (in preparation.)

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