Data Toolkit

Explore data collection and sharing resources for RADx-UP project teams. For more information, please see the Data section of the Frequently Asked Questions page, or reach out to your Engagement Impact Team (EIT) with specific questions.
To explore our full collection of resources for RADx-UP projects, return to the Resources landing page .

NIH RADx-UP COMMON DATA ELEMENTS

Find National Institutes of Health (NIH) RADx-UP Common Data Elements (CDEs), Data Transfer Agreement, Data Harmonization Guidance, and Informed Consent Form (ICF) data sharing language here on our public CDE page.

Supporting Documentation on Data Sharing with RADx Data Hub and CDE Exception Requests

• Frequently Asked Questions on RADx Exec CDEs, from Patti Brennan: This document outlines the difference between major and minor CDE exception requests, as well as the process for requesting one.
• Letter from the co-chairs of the RADx Executive Committee, Rick Woychik and Larry Tabak regarding expectations for data collection: RADx POs, SOs and PMOs are laying out expectations for capturing data from RADx projects, with an exception for tribal nation projects. 
• Letter from Rick Woychik and Larry Tabak regarding the expectation for quarterly data submissions from all RADx projects: Statement of the expectations for a quarterly submission of data by all RADx projects to their DCC/CDCC and a quarterly submission from the CDCC to the NIH Data Hub, with a process for requesting a longer embargo time based on protection of proprietary data which does not apply to Tier 1 CDEs. Requests for exemptions due to waiting for publication are explicitly denied.
• Proposal for RADx (C)DCC Data Sharing with the RADx Data Hub: This document outlines the data sharing and data de-identification policy for submission to the NIH RADx Data Hub. This document also includes information about date shifting, zip codes, and participant age capping.

CDE Questions with Dr. Kibbe

If you have questions about the NIH CDEs, or are interested in learning more, select here to visit our CDE Questions with Dr. Kibbe series, which includes short podcasts as well as written key points.

DATA SUBMISSION GUIDANCE & POLICY 

The RADx-UP CDCC Data Core team has created a data submission guidance document and video to assist project teams with common questions that may come up while uploading study data to the CDCC.

• Select here to download the guide for CDE data.

• Select here to download the guide for Non-CDE data.

• Select here to watch a tutorial video. 

The Data Core team also hosted a data uploads and quality training on Oct. 6. Watch the recording here. This recorded training will be most meaningful for the staff responsible for data collection and data uploads. The RADx-UP Data Quality Resolution Policy outlines the process for reconciling data quality issues in project study data transferred to the CDCC. 

DATA LINKAGE GUIDANCE

RADx-UP data has been linked to various other public data sources, and described here.

RADx-UP CDCC ELECTRONIC HEALTH RECORD (EHR) MAPPING GUIDANCE 

The EHR Mapping Guidance is intended to help RADx-UP projects map EHR data to the RADx-UP NIH Common Data Elements in the survey.  It currently includes guidance on many of the Tier 1 RADx-UP NIH Common Data Elements (CDE) variables, response options, whether the variable is available to map, and guidance on mapping. Download and read the mapping guidance here and download the mapping reference tables here. 

RADx-UP DATA SHARING POLICY

The RADx-UP Data Sharing Policy aims to promote wide and timely dissemination of data within the RADx-UP Consortium and its communities, the NIH, and the public to ensure their maximum utility and impact. Download and read the policy here.

PROJECT STUDY DESIGN SUMMARY TABLE

The Project Study Design Summary Table outlines key study design characteristics for RADx-UP projects. Although projects follow a standardized data format based on the NIH RADx-UP Common Data Elements, differences in the target study populations, study settings and data collection processes exist across projects. To understand the diverse study designs and their nuances, metadata are compiled from project-completed forms and surveys, which are then summarized and presented in this table. Download the summary table here.