Considerations for Designing an
Epidemiologic Study for Multiple Sclerosis
and Other Neurologic Disorders in Pre and
Post 9/11 Gulf War Veterans
Committee on Designing an Epidemiologic Study for Multiple Sclerosis and Other
Neurologic Disorders in Veterans of the Persian Gulf and Post 9/11 Wars
Board on the Health of Select Populations
Institute of Medicine
THE NATIONAL ACADEMIES PRESS
Washington, DC
THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001
This activity was supported by Contract No. VA241-P-2024/VA119A-15-J-0030 from the U.S. Department of Veterans Affairs. Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project.
International Standard Book Number-13: 978-0-309-38865-8
International Standard Book Number-10: 0-309-38865-1
DOI: 10.17226/21870
Additional copies of this report are available for sale from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624-6242 or (202) 334-3313; http://www.nap.edu.
Copyright 2015 by the National Academy of Sciences. All rights reserved.
Printed in the United States of America
Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2015. Considerations for Designing an Epidemiologic Study for Multiple Sclerosis and Other Neurologic Disorders in Pre and Post 9/11 Gulf War Veterans. Washington, DC: The National Academies Press.
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COMMITTEE ON DESIGNING AN EPIDEMIOLOGIC STUDY FOR MULTIPLE SCLEROSIS AND OTHER NEUROLOGIC DISORDERS IN VETERANS OF THE PERSIAN GULF AND POST 9/11 WARS
Roderick J. Little, PhD (Chair), Richard D. Remington Distinguished University Professor of Biostatistics, Department of Biostatistics, School of Public Health, University of Michigan
Babette Brumback, PhD, Professor and Associate Chair, Department of Biostatistics, College of Public Health and Health Professions and College of Medicine, University of Florida
Francesca Dominici, PhD, Professor and Senior Associate Dean for Research, Department of Biostatistics, Harvard T.H. Chan School of Public Health
Elena Erosheva, PhD, Associate Professor of Statistics and Social Work, Center for Statistics and the Social Sciences, Department of Statistics and the School of Social Work, University of Washington
Michael E. Goldberg, MD, David Mahoney Professor of Brain and Behavior, Departments of Neuroscience, Neurology, Psychiatry, and Ophthalmology, College of Physicians and Surgeons, Columbia University Medical Center
Donald Hedeker, PhD, Professor of Biostatistics, Department of Public Health Sciences, Biological Sciences Division, University of Chicago
Annette M. Langer-Gould, MD, PhD, Research Scientist MD, Neurology, Kaiser Permanente Research
Lorene Nelson, PhD, MS, Associate Professor, Division of Epidemiology, Department of Health Research and Policy and Associate Director of Stanford Center for Population Health Sciences, Stanford University School of Medicine
DeJuran Richardson, PhD, Professor of Mathematics, Department of Mathematics and Computer Science, Lake Forest College
Ira Shoulson, MD, Professor of Neurology, Pharmacology and Human Science and Director, Program for Regulatory Science and Medicine, Georgetown University
Lawrence Steinman, MD, George A. Zimmermann Professor of Neurology and Neurological Sciences and Pediatrics, Beckman Center for Molecular Medicine, Stanford University
Barbara G. Vickrey, MD, MPH, Chair, Department of Neurology, Icahn School of Medicine at Mount Sinai
Christina Wolfson, PhD, Director of the Neuroepidemiology Research Unit, McGill University Health Centre and Professor, Department of Epidemiology, Biostatistics and Occupational Health, McGill University
Staff
Carolyn E. Fulco, Scholar
Anne Styka, Program Officer
Sulvia Doja, Research Associate
Joseph Goodman, Senior Program Assistant
Frederick Erdtmann, Director, Board on the Health of Select Populations
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REVIEWERS
This report has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making its published report as sound as possible and to ensure that the report meets institutional standards for objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process. We wish to thank the following individuals for their review of this report:
Sandro Galea, Boston University School of Public Health
Kenneth Kizer, University of California, Davis, School of Medicine and Betty Irene Moore School of Nursing and University of California, Davis, Health System
Richard Mayeux, Sergievsky Center and Columbia University
Barbara McKnight, University of Washington
Tyler Smith, National University School of Health and Human Services
Alan Zaslavsky, Harvard Medical School
Although reviewers listed above have provided many constructive comments and suggestions, they did not see the final draft of the report before its release. The review of this report was overseen by Dan G. Blazer, Emeritus, Duke University Medical Center, and Floyd E. Bloom, The Scripps Research Institute. They were responsible for making certain that an independent examination of this report was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this report rests entirely with the authoring committee and the institution.
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CONTENTS
BRIEF REPORT ON CONSIDERATIONS OF DESIGNING AN EPIDEMIOLOGIC STUDY FOR NEUROLOGIC DISORDERS
Case Ascertainment from Administrative Databases
Limitations of Using VA Data Sources
A INFORMATION REGARDING THE LEGISLATION DIRECTING THE STUDY
S.3023 Veterans’ Benefits Improvement Act of 2008
Department of Veterans Affairs Utilization Reports
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AFHSC | Armed Forces Health Surveillance Center |
CDC | Centers for Disease Control and Prevention |
CI | confidence interval |
CMS | Centers for Medicare & Medicaid Services |
DMDC | Defense Manpower Data Center |
DOD | Department of Defense |
ICD-9-CM | International Classification of Diseases, Ninth Revision, Clinical Modification |
IOM | Institute of Medicine |
MS | multiple sclerosis |
MSMR | Medical Surveillance Monthly Report |
NewGen | National Health Study for a New Generation of US Veterans |
NHS | National Health Survey of Gulf War Era Veterans and Their Families |
ODD | other demyelinating disease |
OEF | Operation Enduring Freedom |
OIF | Operation Iraqi Freedom |
OND | Operation New Dawn |
OR | odds ratio |
PTSD | posttraumatic stress disorder |
RR | relative risk |
SOT | statement of task |
VA | Department of Veterans Affairs |
VBA | Veterans Benefits Administration |
VHA | Veterans Health Administration |
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