A common language for Gulf War Illness (GWI) research studies: GWI common data elements
| Autor: | Alison Bested, Elizabeth Balbin, Michelle Block, Anthony Hardie, Nancy Klimas, Jimmy Arocho, Marianna Morris, Maxine Krengel, Brian E. Engdahl, Kristy Lidie, Amanapreet Cheema, Jeffrey Cournoyer, Nancy G. Klimas, Kathleen Kerr, Efi Kokkotou, Peter Rumm, Nikolay M. Filipov, Wes Ashford, Kimberly Sullivan, James Bunker, Victor F. Kalasinsky, Bryann DeBeer, Shannon Nugent, Mohamed Abu-Donia, Kristina K. Aenlle, Travis J. A. Craddock, Gwi Cde Administrative Team, Rebecca B. McNeil, Patricia Janulewicz Lloyd, Deborah Little, Bonnie Paris, Kellie J. Sims, Karen Block, William Loging, Paula A. Faria Waziry, Marsha Turner, Jacob B. Lindheimer, Maria Abreu, Devra E. Cohen, James N. Baraniuk, Dane B. Cook, Devra Cohen, Shree Nadkarni, Jarred Younger, Lubov Nathanson, Montra Denise Nichols, Laila Abdullah, Matthew J. Reinhard, Mary A Fletcher, Lea Steele, Giulio Maria Pasinetti, Aaron I. Schneiderman, Dikoma C. Shungu, Drew A. Helmer, Julia A. Golier, Jon VanLeeuwen |
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| Jazyk: | angličtina |
| Rok vydání: | 2021 |
| Předmět: |
medicine.medical_specialty
Data collection Biomedical Research Common Data Elements Information Dissemination Veterans Health General Medicine Gulf war General Biochemistry Genetics and Molecular Biology Article United States Data sharing United States Department of Veterans Affairs Research community Family medicine Data quality medicine Research studies Humans National Institute of Neurological Disorders and Stroke (U.S.) Persian Gulf Syndrome General Pharmacology Toxicology and Pharmaceutics Psychology |
| Zdroj: | Life Sci |
| Popis: | 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. |
| Databáze: | OpenAIRE |
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