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

LIFE SCIENCES

卷:290

Article

Cohen, Devra E.^1,2  Sullivan, Kimberly A.³  McNeil, Rebecca B.⁴  Klimas, Nancy G.^1,2  Ashford, Wes⁵  Bested, Alison²  Bunker, James⁶  Cheema, Amanpreet²  Cook, Dane⁷  Cournoyer, Jeffrey²  Craddock, Travis²  Golier, Julia⁸  Hardie, Anthony^9,10  Helmer, Drew¹¹  Lindheimer, Jacob B.¹²  Lloyd, Patricia Janulewicz¹³  Kerr, Kathleen¹⁴  Krengel, Maxine¹⁵  Nadkarni, Shree¹⁶  Nugent, Shannon¹⁷  Paris, Bonnie¹⁸  Reinhard, Matthew¹⁹  Rumm, Peter²⁰  Schneiderman, Aaron²⁰  Sims, Kellie J.²¹  Steele, Lea²²  Turner, Marsha²¹  Abdullah, Laila²³  Abreu, Maria^1,2  Abu-Donia, Mohamed²⁴  Aenlle, Kristina^1,2  Arocho, Jimmy^2,25  Balbin, Elizabeth^1,2  Baraniuk, James²⁶  Block, Karen²⁷  Block, Michelle²⁸  DeBeer, Bryann²⁹  Engdahl, Brian³⁰  Filipov, Nikolay³¹  Fletcher, Mary Ann²  Kalasinsky, Victor²⁷  Kokkotou, Efi³²  Lidie, Kristy^33,34  Little, Deborah²²  Loging, William³⁵  Morris, Marianna²  Nathanson, Lubov²  Nichols, Montra Denise³⁶  Pasinetti, Giulio³⁷  Shungu, Dikoma³⁸  Waziry, Paula³⁹  VanLeeuwen, Jon⁴⁰  Younger, Jarred⁴¹ 

[1] Miami VA Healthcare Syst, Miami, FL USA

[2] Nova Southeastern Univ, Dr Kiran C Patel Coll Osteopath Med, Inst Neuro Immune Med, Ft Lauderdale, FL 33314 USA

[3] Boston Univ, Sch Publ Hlth, Dept Environm Hlth, Boston, MA USA

[4] RTI Int, Res Triangle Pk, NC USA

[5] VA Palo Healthcare Syst, War Related Illness & Injury Study Ctr, Palo Alto, CA USA

[6] Natl Gulf War Resource Ctr Inc, Topeka, KS USA

[7] Univ Wisconsin, Madison, WI USA

[8] Icahn Sch Med Mt Sinai, James J Peters VA Med Ctr, Bronx, NY USA

[9] Vet Common Sense, Bradenton, FL USA

[10] US Army, Bradenton, FL USA

[11] Michael E DeBakey VA Med Ctr, Houston, TX USA

[12] Univ Wisconsin, William S Middleton Vet Mem Hosp, Madison, WI USA

[13] Boston Univ, Boston, MA 02215 USA

[14] Univ Toronto, Toronto, ON, Canada

[15] Boston Univ, Boston VA Healthcare Syst, Boston, MA 02215 USA

[16] VA New Jersey Hlth Care Syst, War Related Illness & Injury Study Ctr, East Orange, NJ USA

[17] VA Portland Hlth Care Syst, Portland, OR USA

[18] VA Informat Resource Ctr VIReC, Hines, IL USA

[19] Washington DC VA Med Ctr, War Related Illness & Injury Study Ctr, Washington, DC USA

[20] US Dept Vet Affairs, Washington, DC USA

[21] Durham VA Med Ctr, Cooperat Studies Program Epidemiol Ctr, Durham, NC USA

[22] Baylor Coll Med, Houston, TX 77030 USA

[23] Roskamp Inst, Sarasota, FL USA

[24] Duke Univ Med Ctr, Durham, NC USA

[25] US Army, Washington, DC 20310 USA

[26] Georgetown Univ, Washington, DC USA

[27] US Dept Vet Affairs, Off Res & Dev, Washington, DC USA

[28] Indiana Univ, Indianapolis, IN 46204 USA

[29] Texas A&M Hlth Sci Ctr, Cent Texas Vet Healthcare Syst, Waco, TX USA

[30] Univ Minnesota, Minneapolis VA Hlth Care Syst, Minneapolis, MN USA

[31] Univ Georgia, Atlanta, GA USA

[32] Harvard Univ, Beth Israel Deaconess Med Ctr, Boston, MA 02115 USA

[33] US Army, Ft Detrick, MD USA

[34] Med Res & Mat Command, Ft Detrick, MD USA

[35] US Marine Corps, Ft Lauderdale, FL USA

[36] US Air Force, Washington, DC 20330 USA

[37] Icahn Sch Med Mt Sinai, Bronx, NY USA

[38] Weill Cornell Med Ctr, New York, NY USA

[39] Nova Southeastern Univ, Ft Lauderdale, FL 33314 USA

[40] Univ Calif San Francisco, VA Res Advisory Comm Gulf War Vet Illnesses, San Francisco, CA 94143 USA

[41] Univ Alabama Birmingham, Birmingham, AL USA

关键词: GWI;    CDE;    GW;    GWV;    CDMRP;    VA;    DoD;   

DOI  :  10.1016/j.lfs.2021.119818

来源: Elsevier

【 摘 要 】

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 recom-mendations 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 recom-mended (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.

【 授权许可】

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