A community-engaged approach to developing common data elements: a case study from the RADx-UP Long COVID common data elements Task Force

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.