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. 2022 Feb 1:290:119818.
doi: 10.1016/j.lfs.2021.119818. Epub 2021 Aug 2.

A common language for Gulf War Illness (GWI) research studies: GWI common data elements

Devra E Cohen  1 , Kimberly A Sullivan  2 , Rebecca B McNeil  3 ; Gulf War Illness Common Data Elements Working Group:; Symptoms Assessment Working Group:; Rebecca B McNeil  3 , Wes Ashford  4 , Alison Bested  5 , James Bunker  6 , Amanpreet Cheema  5 , Devra E Cohen  7 , Dane Cook  8 , Jeffrey Cournoyer  5 , Travis Craddock  5 , Julia Golier  9 , Anthony Hardie  10 , Drew Helmer  11 , Jacob B Lindheimer  12 , Patricia Janulewicz Lloyd  13 , Kathleen Kerr  14 , Maxine Krengel  15 , Shree Nadkarni  16 , Shannon Nugent  17 , Bonnie Paris  18 , Matthew Reinhard  19 , Peter Rumm  20 , Aaron Schneiderman  20 , Kellie J Sims  21 , Lea Steele  22 , Marsha Turner  21 ; Systems Assessment Working Group:; Kimberly A Sullivan  2 , Laila Abdullah  23 , Maria Abreu  7 , Mohamed Abu-Donia  24 , Kristina Aenlle  7 , Jimmy Arocho  25 , Elizabeth Balbin  7 , James Baraniuk  26 , Karen Block  27 , Michelle Block  28 , Bryann DeBeer  29 , Brian Engdahl  30 , Nikolay Filipov  31 , Mary Ann Fletcher  5 , Victor Kalasinsky  27 , Efi Kokkotou  32 , Kristy Lidie  33 , Deborah Little  22 , William Loging  34 , Marianna Morris  5 , Lubov Nathanson  5 , Montra Denise Nichols  35 , Giulio Pasinetti  36 , Dikoma Shungu  37 , Paula Waziry  38 , Jon VanLeeuwen  39 , Jarred Younger  40
Affiliations

A common language for Gulf War Illness (GWI) research studies: GWI common data elements

Devra E Cohen et al. Life Sci. .

Abstract

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.

Keywords: CDE; CDMRP; DoD; GW; GWI; GWV; VA.

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