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Updated: Jun 14, 2025

Methodology for Establishing a Community-Wide Life Laboratory for Capturing Unobtrusive and Continuous Remote Activity and Health Data
Published on: July 27, 2018
A community-engaged approach to developing common data elements: a case study from the RADx-UP Long COVID common data
Helena L Pike Welch1, Gregory Guest2, Halima Garba1
1Duke Clinical Research Institute, Duke University School of Medicine, Durham, NC 27701, United States.
Objectives:
In response to requests from several Rapid Acceleration of Diagnostics-Underserved Populations (RADx-UP) community-engaged research projects to include Long COVID common data elements (CDEs) in the existing RADx-UP CDEs, the RADx-UP Coordination and Data Collection Center (CDCC) leadership formed the Long COVID CDEs Task Force.
Materials And Methods:
The Task Force, composed mainly of community partners and RADx-UP project members, participated in various activities to evaluate the Long COVID CDEs fit for purpose from the Researching COVID to Enhance Recovery (RECOVER) program for RADx-UP use.
Results And Discussion:
The Task Force's efforts led to a compilation of lessons learned and the creation of a novel set of 28 CDEs that are appropriate for community-engaged research in Long COVID.
Conclusion:
Utilization of standardized CDEs does not always work for the communities involved in the research, but creation of a community-involved task force can lead to a meaningful, rich set of CDEs.
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