Skip to main content
Journal cover image

Standardizing, harmonizing, and protecting data collection to broaden the impact of COVID-19 research: the rapid acceleration of diagnostics-underserved populations (RADx-UP) initiative.

Publication ,  Journal Article
Carrillo, GA; Cohen-Wolkowiez, M; D'Agostino, EM; Marsolo, K; Wruck, LM; Johnson, L; Topping, J; Richmond, A; Corbie, G; Kibbe, WA
Published in: J Am Med Inform Assoc
August 16, 2022

OBJECTIVE: The Rapid Acceleration of Diagnostics-Underserved Populations (RADx-UP) program is a consortium of community-engaged research projects with the goal of increasing access to Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2) tests in underserved populations. To accelerate clinical research, common data elements (CDEs) were selected and refined to standardize data collection and enhance cross-consortium analysis. MATERIALS AND METHODS: The RADx-UP consortium began with more than 700 CDEs from the National Institutes of Health (NIH) CDE Repository, Disaster Research Response (DR2) guidelines, and the PHENotypes and eXposures (PhenX) Toolkit. Following a review of initial CDEs, we made selections and further refinements through an iterative process that included live forums, consultations, and surveys completed by the first 69 RADx-UP projects. RESULTS: Following a multistep CDE development process, we decreased the number of CDEs, modified the question types, and changed the CDE wording. Most research projects were willing to collect and share demographic NIH Tier 1 CDEs, with the top exception reason being a lack of CDE applicability to the project. The NIH RADx-UP Tier 1 CDE with the lowest frequency of collection and sharing was sexual orientation. DISCUSSION: We engaged a wide range of projects and solicited bidirectional input to create CDEs. These RADx-UP CDEs could serve as the foundation for a patient-centered informatics architecture allowing the integration of disease-specific databases to support hypothesis-driven clinical research in underserved populations. CONCLUSION: A community-engaged approach using bidirectional feedback can lead to the better development and implementation of CDEs in underserved populations during public health emergencies.

Duke Scholars

Altmetric Attention Stats
Dimensions Citation Stats

Published In

J Am Med Inform Assoc

DOI

EISSN

1527-974X

Publication Date

August 16, 2022

Volume

29

Issue

9

Start / End Page

1480 / 1488

Location

England

Related Subject Headings

  • Vulnerable Populations
  • United States
  • Stakeholder Participation
  • SARS-CoV-2
  • National Institute of Neurological Disorders and Stroke (U.S.)
  • Medical Informatics
  • Male
  • Humans
  • Female
  • Data Collection
 

Citation

APA
Chicago
ICMJE
MLA
NLM
Carrillo, G. A., Cohen-Wolkowiez, M., D’Agostino, E. M., Marsolo, K., Wruck, L. M., Johnson, L., … Kibbe, W. A. (2022). Standardizing, harmonizing, and protecting data collection to broaden the impact of COVID-19 research: the rapid acceleration of diagnostics-underserved populations (RADx-UP) initiative. J Am Med Inform Assoc, 29(9), 1480–1488. https://doi.org/10.1093/jamia/ocac097
Carrillo, Gabriel A., Michael Cohen-Wolkowiez, Emily M. D’Agostino, Keith Marsolo, Lisa M. Wruck, Laura Johnson, James Topping, Al Richmond, Giselle Corbie, and Warren A. Kibbe. “Standardizing, harmonizing, and protecting data collection to broaden the impact of COVID-19 research: the rapid acceleration of diagnostics-underserved populations (RADx-UP) initiative.J Am Med Inform Assoc 29, no. 9 (August 16, 2022): 1480–88. https://doi.org/10.1093/jamia/ocac097.
Carrillo GA, Cohen-Wolkowiez M, D’Agostino EM, Marsolo K, Wruck LM, Johnson L, et al. Standardizing, harmonizing, and protecting data collection to broaden the impact of COVID-19 research: the rapid acceleration of diagnostics-underserved populations (RADx-UP) initiative. J Am Med Inform Assoc. 2022 Aug 16;29(9):1480–8.
Carrillo, Gabriel A., et al. “Standardizing, harmonizing, and protecting data collection to broaden the impact of COVID-19 research: the rapid acceleration of diagnostics-underserved populations (RADx-UP) initiative.J Am Med Inform Assoc, vol. 29, no. 9, Aug. 2022, pp. 1480–88. Pubmed, doi:10.1093/jamia/ocac097.
Carrillo GA, Cohen-Wolkowiez M, D’Agostino EM, Marsolo K, Wruck LM, Johnson L, Topping J, Richmond A, Corbie G, Kibbe WA. Standardizing, harmonizing, and protecting data collection to broaden the impact of COVID-19 research: the rapid acceleration of diagnostics-underserved populations (RADx-UP) initiative. J Am Med Inform Assoc. 2022 Aug 16;29(9):1480–1488.
Journal cover image

Published In

J Am Med Inform Assoc

DOI

EISSN

1527-974X

Publication Date

August 16, 2022

Volume

29

Issue

9

Start / End Page

1480 / 1488

Location

England

Related Subject Headings

  • Vulnerable Populations
  • United States
  • Stakeholder Participation
  • SARS-CoV-2
  • National Institute of Neurological Disorders and Stroke (U.S.)
  • Medical Informatics
  • Male
  • Humans
  • Female
  • Data Collection