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Institute of Medicine (US) Committee on the Public Health Dimensions of the Epilepsies; England MJ, Liverman CT, Schultz AM, et al., editors. Epilepsy Across the Spectrum: Promoting Health and Understanding. Washington (DC): National Academies Press (US); 2012.

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Epilepsy Across the Spectrum: Promoting Health and Understanding.

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Acknowledgments

This report was informed by the contributions of many individuals who provided expertise, personal insights and perspectives, and data. The Institute of Medicine (IOM) Committee on the Public Health Dimensions of the Epilepsies would like to express its sincere gratitude to everyone who made this report possible.

First, the committee would like to thank the sponsors of this study. Funds were provided through several divisions of the U.S. Department of Health and Human Services (HHS): Administration on Developmental Disabilities, Center for Devices and Radiological Health (Food and Drug Administration [FDA]), Center for Drug Evaluation and Research (FDA), Eunice Kennedy Shriver National Institute of Child Health and Human Development (National Institutes of Health [NIH]), National Center for Chronic Disease Prevention and Health Promotion (Centers for Disease Control and Prevention [CDC]), National Center on Birth Defects and Developmental Disabilities (CDC), National Institute of Mental Health (NIH), National Institute of Neurological Disorders and Stroke (NIH), National Institute on Aging (NIH), Office of the Assistant Secretary for Health (HHS), Office of the Assistant Secretary for Planning and Evaluation (HHS), and Office on Women's Health (HHS); and by members of the Vision 20-20 collaborative: American Epilepsy Society, Citizens United for Research in Epilepsy, Dravet.org, Epilepsy Foundation, Epilepsy Therapy Project, Finding A Cure for Epilepsy and Seizures, Hemispherectomy Foundation, International League Against Epilepsy, National Association of Epilepsy Centers (NAEC), Preventing Teen Tragedy, Rasmussen's Encephalitis Children's Project, and Tuberous Sclerosis Alliance. These 24 federal agencies and nonprofit organizations came together with a vision for advancing the field of epilepsy and improving the lives of individuals with epilepsy by focusing this study on the public health dimensions of the disorder. The efforts of many individuals, including Frances Jensen, Howard Koh, and Story Landis, were instrumental in getting the study under way.

Over the course of the study, the committee conducted two public workshops during which more than 80 researchers, experts, health professionals, and individuals with epilepsy and their families and friends provided presentations and testimony (Appendix A). The committee also heard from numerous individuals throughout the study who shared their personal stories via e-mail. The committee is especially grateful to the individuals who provided compelling and candid information about their own personal experiences with epilepsy, including their concerns, burdens, joys, and challenges. Excerpts from testimony the committee received is interspersed throughout the chapters of this report.

The committee is also appreciative of the background information and data that individuals, sponsors, and other epilepsy-related organizations generously provided to inform the committee's work, including a wealth of information about research, programs, campaigns, website statistics, and the history of the epilepsy movement.

The committee would like to recognize a number of individuals who graciously devoted time and energy to gathering and summarizing the data on people with epilepsy and their health services use that appear in Appendixes B and C of this report. Contributors included David R. Nerenz, Gregory L. Barkley, Marianna Spanaki-Varelas, Aida Li, and their colleagues at Henry Ford Health System; Matthew A. R. Eccher, Joshua N. Liberman, Amanda C. Bengier, Frank G. Gilliam, and their colleagues in the Geisinger Health System; Mary Jo Pugh, Megan Amuan, and their colleagues at the Veterans Health Administration; Anbesaw W. Selassie, Chris Finney, Sandra Kelly, and their colleagues from the South Carolina Epilepsy Surveillance System; and Robert J. Gumnit, David M. Labiner, Nathan B. Fountain, Susan T. Herman, Ellen Riker, and the epilepsy centers that participated in the 2011 NAEC Center Designation Survey and the 2011 Supplemental Survey for the IOM, both conducted by the NAEC.

The committee is also grateful to the more than 50 health professional boards and associations that took the time to answer the committee's questions and provide information on certification and licensure requirements, curricular content, and continuing education opportunities and requirements for the wide range of health professionals that work daily to provide people with epilepsy and their families with high-quality, patient-centered health care, community, and educational services. While these boards and associations are too numerous to list here, many of them are listed Appendix D, and the information they provided was vital to the committee's understanding of the complexity and variation in health professional education about the epilepsies.

Special appreciation goes to the dedicated IOM study staff members who supported and contributed to the committee's work during the last 18 months. Cathy Liverman and Andrea Schultz co-directed the study; Lara Strawbridge provided invaluable research support; and Judy Estep skillfully managed all logistical and administrative aspects of the study. The committee is also grateful to Vicki Weisfeld of NEW Associates, LLC, for their assistance in editing the report and for their keen attention to detail; to Florence Poillon for copyediting the final version of the report; and to LeAnn Locher for her artistic talents in creating the cover and design elements throughout the report.

Finally, the committee would like to express its thanks to the IOM and National Academies staff members who worked behind the scenes to ensure a seamless study process and successful production and dissemination of this report: Clyde Behney, Daniel Bethea, Laura DeStefano, Jim Jensen, Rachel Marcus, Abbey Meltzer, Andy Pope, Donna Randall, Lauren Rugani, Christine Stencel, Lora Taylor, Vilija Teel, Lauren Tobias, Gary Walker, and Sarah Ziegenhorn.

Copyright © 2012, National Academy of Sciences.
Bookshelf ID: NBK100601
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