Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2023 Jul 1;152(Suppl 1):e2022060352N.
doi: 10.1542/peds.2022-060352N.

Common Data Element Collection in Underserved School Communities: Challenges and Recommendations

Diya M Uthappa  1 , Tara K Mann  2 , Jennifer L Goldman  3 , Jennifer E Schuster  3 , Jason G Newland  4 , William B Anderson  2 , Ann Dozier  5 , Moira Inkelas  6 , John J Foxe  7 , Lisa Gwynn  8 , Christina A Gurnett  9 , Corinne McDaniels-Davidson  10 , Tyler Walsh  4 , Tremayne Watterson  4 , Jeanne Holden-Wiltse  11 , Jessie M Potts  12 , Emily M D'Agostino  13 , Karen Zandi  14 , Anthony Corbett  11 , Samantha Spallina  15 , Gregory P DeMuri  16 , Yelena P Wu  17   18 , Elizabeth R Pulgaron  19 , Susan M Kiene  10 , Eyal Oren  10 , Joshuaa D Allison-Burbank  20 , May Okihiro  21 , Rebecca E Lee  22 , Sara B Johnson  23 , Tammy K Stump  17   18 , Ryan J Coller  16 , Dana Keener Mast  12 , Emily E Haroz  24 , Steven Kemp  2 , Daniel K Benjamin  2   25   26 , Kanecia O Zimmerman  2   25   26
Affiliations

Common Data Element Collection in Underserved School Communities: Challenges and Recommendations

Diya M Uthappa et al. Pediatrics. .

Abstract

Objectives: To provide recommendations for future common data element (CDE) development and collection that increases community partnership, harmonizes data interpretation, and continues to reduce barriers of mistrust between researchers and underserved communities.

Methods: We conducted a cross-sectional qualitative and quantitative evaluation of mandatory CDE collection among Rapid Acceleration of Diagnostics-Underserved Populations Return to School project teams with various priority populations and geographic locations in the United States to: (1) compare racial and ethnic representativeness of participants completing CDE questions relative to participants enrolled in project-level testing initiatives and (2) identify the amount of missing CDE data by CDE domain. Additionally, we conducted analyses stratified by aim-level variables characterizing CDE collection strategies.

Results: There were 15 study aims reported across the 13 participating Return to School projects, of which 7 (47%) were structured so that CDEs were fully uncoupled from the testing initiative, 4 (27%) were fully coupled, and 4 (27%) were partially coupled. In 9 (60%) study aims, participant incentives were provided in the form of monetary compensation. Most project teams modified CDE questions (8/13; 62%) to fit their population. Across all 13 projects, there was minimal variation in the racial and ethnic distribution of CDE survey participants from those who participated in testing; however, fully uncoupling CDE questions from testing increased the proportion of Black and Hispanic individuals participating in both initiatives.

Conclusions: Collaboration with underrepresented populations from the early study design process may improve interest and participation in CDE collection efforts.

PubMed Disclaimer

Conflict of interest statement

CONFLICT OF INTEREST DISCLOSURES: Dr Zimmerman reports funding from the National Institutes of Health (NIH) and US Food and Drug Administration. Dr Goldman reports funding from the NIH. Dr Schuster reports funding from the NIH. The other authors have indicated they have no potential conflicts of interest to disclose.

Figures

FIGURE 1
FIGURE 1
Statewide distribution of RTS project involvement. This figure displays the statewide distribution of RTS project involvement, color-coded by the number of projects per state. RTS, return to school (initiative).
See this image and copyright information in PMC

References

    1. NIH CDE Repository . Guide to the NIH CDE repository. Available at: https://cde.nlm.nih.gov/guides#nih-endorsement-and-submissions. Accessed September 1, 2022
    1. Kush RD, Warzel D, Kush MA, et al. . FAIR data sharing: the roles of common data elements and harmonization. J Biomed Inform. 2020;107:103421. - PubMed
    1. Centers for Disease Control and Prevention . Core data elements for IIS functional standards v4.0. Available at: https://www.cdc.gov/vaccines/programs/iis/core-data-elements/iis-func-st.... Accessed September 1, 2022
    1. O’Connor DP, Lee RE, Mehta P, et al. ; EC-CORD (BETTER Policies) Team . Childhood Obesity Research Demonstration project: cross-site evaluation methods. Child Obes. 2015;11(1):92–103 - PMC - PubMed
    1. Welch LC, Tomoaia-Cotisel A, Noubary F, et al. . Evaluation of initial progress to implement common metrics across the NIH Clinical and Translational Science Awards (CTSA) Consortium. J Clin Transl Sci. 2020;5(1):e25. - PMC - PubMed

Publication types