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

## TL;DR

This paper describes how a community-involved task force helped develop 28 new data elements for Long COVID research that better fit community-engaged studies.

## Contribution

The novel contribution is the creation of a community-involved task force that produced a tailored set of Long COVID common data elements.

## Key findings

- A task force of community partners and researchers developed 28 new Long COVID common data elements.
- Standardized data elements may not work well for community research without community input.
- Community involvement led to meaningful and context-appropriate data elements for Long COVID studies.

## Abstract

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.

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.

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.

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.