A community-engaged approach to developing common data elements: a case study from the RADx-UP Long COVID common data elements Task Force
View abstract on PubMed
Summary
This summary is machine-generated.A Long COVID Common Data Elements (CDEs) Task Force, including community partners, developed 28 CDEs for community-engaged research. This ensures Long COVID research data accurately reflects community needs.
Area Of Science
- Public Health Research
- Data Standardization
- Community Engagement
Background
- The Rapid Acceleration of Diagnostics-Underserved Populations (RADx-UP) program sought to integrate Long COVID common data elements (CDEs) into existing data collection protocols.
- Requests from community-engaged research projects highlighted the need for Long COVID-specific CDEs.
Observation
- A dedicated Long COVID CDEs Task Force was established by the RADx-UP Coordination and Data Collection Center (CDCC).
- The Task Force comprised primarily community partners and RADx-UP project members, ensuring diverse perspectives.
- They evaluated the suitability of Long COVID CDEs from the Researching COVID to Enhance Recovery (RECOVER) program for RADx-UP initiatives.
Findings
- The Task Force's collaborative efforts resulted in the creation of 28 novel CDEs tailored for Long COVID community-engaged research.
- Key lessons were learned regarding the adaptation of standardized CDEs for community contexts.
Implications
- The developed CDEs are appropriate for community-engaged Long COVID research, enhancing data relevance.
- Involving community members in CDE development leads to more meaningful and applicable data collection tools.
- This approach can improve the quality and utility of data in Long COVID research, particularly in underserved populations.
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