Common data elements to advance ME/CFS research

Common data elements to advance ME/CFS research Standardizing data collection in ME/CFS research through Common Data Elements is a crucial step toward improving diagnosis, advancing treatments, and fostering collaboration across studies to accelerate progress in understanding this complex disease. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a serious, debilitating, and underdiagnosed chronic disease characterized by profound fatigue, unrefreshing sleep, and post-exertional malaise. (1) Despite decades of research, the etiology and pathogenesis of ME/CFS remain unclear. The complexity and heterogeneity of the disorder pose significant challenges for researchers working to identify its underlying mechanisms and develop effective treatments. (1-2) In addition, variability in the diagnostic criteria, assessment methods, and outcome measures used across studies impedes researchers’ ability to compare findings. (2) Adopting Common Data Elements (CDEs) in ME/ CFS research is critical in addressing these challenges.

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Publication Details

Journal
Open Access Government
Published
2025-04-08
DOI
https://doi.org/10.56367/oag-046-11332
Citations
1
Primary Topic
Advanced Sensor and Energy Harvesting Materials
Type
article
Field-Weighted Citation Impact
0.67
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article

Common data elements to advance ME/CFS research

Megan Ulmer Carnes, Mike Enger, Línda Morris Brown
1 citations
Open Access Government
Advanced Sensor and Energy Harvesting Materials
0.67
article

Common data elements to advance ME/CFS research

Megan Ulmer Carnes, Mike Enger, Línda Morris Brown
article en
1 citations

Abstract

Common data elements to advance ME/CFS research Standardizing data collection in ME/CFS research through Common Data Elements is a crucial step toward improving diagnosis, advancing treatments, and fostering collaboration across studies to accelerate progress in understanding this complex disease. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a serious, debilitating, and underdiagnosed chronic disease characterized by profound fatigue, unrefreshing sleep, and post-exertional malaise. (1) Despite decades of research, the etiology and pathogenesis of ME/CFS remain unclear. The complexity and heterogeneity of the disorder pose significant challenges for researchers working to identify its underlying mechanisms and develop effective treatments. (1-2) In addition, variability in the diagnostic criteria, assessment methods, and outcome measures used across studies impedes researchers’ ability to compare findings. (2) Adopting Common Data Elements (CDEs) in ME/ CFS research is critical in addressing these challenges.

Open Access GovernmentVol. 46(1)
RTI International (US)
Openalex Percentile: Top 33%
Advanced Sensor and Energy Harvesting Materials
0.67
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