Faculty Articles

A Common Language for Gulf War Illness (GWI) Research Studies: GWI Common Data Elements


Devra E. Cohen, Nova Southeastern UniversityFollow
Kimberly A. Sullivan, Boston University School of Public Health
Rebecca B McNeil, RTI International, Research Triangle Park, NC, United States
Gulf War Illness Common Data Elements Working Group
Symptoms Assessment Working Group
J Wesson Ashford, War Related Illness & Injury Study Center, VA Palo Alto Health Care System, Palo Alto, CA, United States
Alison Bested, Nova Southeastern UniversityFollow
James Bunker, National Gulf War Resource Center, Inc., Topeka, KS, United States
Amanpreet K Cheema, Nova Southeastern UniversityFollow
Dane Cook, University of Wisconsin-MadisonFollow
Jeffrey Cournoyer, Nova Southeastern UniversityFollow
Travis Craddock, Nova Southeastern UniversityFollow
Julia Golier, James J. Peters VA Medical Center
Anthony Hardie, Veterans for Common Sense and former U.S. Army
Drew A Helmer, Center for Innovations in Quality, Effectiveness and Safety, Michael E. DeBakey VA Medical Center, Houston, TX, United States
Jacob B. Lindheimer, University of Wisconsin- MadisonFollow
Patricia Janulewicz Lloyd, Boston UniversityFollow
Kathleen Kerr, University of TorontoFollow
Maxine Krengel, VA Boston Healthcare System, Boston, MA, United States
Shree Nadkarni, War Related Illness and Injury Study Center, VA New Jersey Health Care System, East Orange, NJ, United States
Shannon Nugent, VA Portland Health Care System, Portland, OR, United States
Bonnie Paris, VA Information Resource Center (VIReC), Hines, IL, United States
Matthew Reinhard, War Related Illness and Injury Study Center, Washington DC VA Medical Center, Washington, DC, United States
Peter Rumm, United States Department of Veterans Affairs
Aaron Schneiderman, United States Department of Veterans Affairs
Kellie J Sims, Cooperative Studies Program Epidemiology Center, Durham VA Medical Center, Durham, NC, United States
Lea Steele, Baylor College of MedicineFollow
Marsha Turner, Cooperative Studies Program Epidemiology Center, Durham VA Medical Center, Durham, NC, United States
Systems Assessment Working Group
Laila Abdullah, Roskamp Institute, Sarasota, FL, United States
Maria M. Abreu, Nova Southeastern UniversityFollow
Mohamed Abu-Donia, Duke University Medical Center
Kristina Aenlle, University of Miami Miller School of Medicine
Jimmy Arocho, Nova Southeastern UniversityFollow
Elizabeth G. Balbin, Nova Southeastern UniversityFollow
James N. Baraniuk, Georgetown University
Karen Block, US Department of Veterans Affairs
Michelle L. Block, Indiana UniversityFollow
Bryann DeBeer, Texas A&M Health Science CenterFollow
Brian Engdahl, Minneapolis VA Health Care System
Nikolay Filipov, University of GeorgiaFollow
Mary Ann Fletcher, Nova Southeastern UniversityFollow
Victor Kalasinsky, US Department of Veterans Affairs
Efi G. Kokkotou, Harvard UniversityFollow
Kristy Lidie, United States Army and Medical Research and Material Command
Deborah M. Little, Baylor College of MedicineFollow
William Loging, United States Marine Corps (Retired)
Mariana Morris, Nova Southeastern UniversityFollow
Lubov Nathanson, Nova Southeastern UniversityFollow
Montra Denise Nichols, United States Air Force (Retired)
Giulio Pasinetti, Icahn School of Medicine at Mount SinaiFollow
Dikoma C. Shungu, Weill Cornell Medical CenterFollow
Paula Waziry, Nova Southeastern UniversityFollow
Jon VanLeeuwen, University of CaliforniaFollow
Jarred Younger, The University of AlabamaFollow

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Life Sciences



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AIMS: The Gulf War Illness programs (GWI) of the United States Department of Veteran Affairs and the Department of Defense Congressionally Directed Medical Research Program collaborated with experts to develop Common Data Elements (CDEs) to standardize and systematically collect, analyze, and share data across the (GWI) research community.

MAIN METHODS: A collective working group of GWI advocates, Veterans, clinicians, and researchers convened to provide consensus on instruments, case report forms, and guidelines for GWI research. A similar initiative, supported by the National Institute of Neurologic Disorders and Stroke (NINDS) was completed for a comparative illness, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and provided the foundation for this undertaking. The GWI working group divided into two sub-groups (symptoms and systems assessment). Both groups reviewed the applicability of instruments and forms recommended by the NINDS ME/CFS CDE to GWI research within specific domains and selected assessments of deployment exposures. The GWI CDE recommendations were finalized in March 2018 after soliciting public comments.

KEY FINDINGS: GWI CDE recommendations are organized in 12 domains that include instruments, case report forms, and guidelines. Recommendations were categorized as core (essential), supplemental-highly recommended (essential for specified conditions, study types, or designs), supplemental (commonly collected, but not required), and exploratory (reasonable to use, but require further validation). Recommendations will continually be updated as GWI research progresses.

SIGNIFICANCE: The GWI CDEs reflect the consensus recommendations of GWI research community stakeholders and will allow studies to standardize data collection, enhance data quality, and facilitate data sharing.



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