Data Resources & Access

Laptop data

Enabling our investigators to access and fully utilize large local and national datasets is a critical function of the CTSI-CN. Our Informatics team has the knowledge and connections to link researchers with powerful data and help them advance health through data science. CTSI-CN also provides tools like REDCap for data management services.

Explore the datasets and tools we currently support below, and contact CTSINavigator@childrensnational.org to request a consultation with an informatics specialist.


Database Resources

National COVID Cohort Collective (N3C)

The National Institutes of Health launched the National COVID Cohort Collaborative (N3C) Data Enclave, a massive database of over 9 million patient records (including over 3 million COVID-positive patient records). Researchers studying COVID-19 can apply to access this innovative new analytics platform containing clinical data from the electronic health records of people who were tested for the novel coronavirus or who had related symptoms. This data resource will help scientists further understand the disease, including potential risk factors, protective factors and long-term health consequences.

Healthcare Cost and Utilization Project (HCUP)

The Healthcare Cost and Utilization Project (HCUP) is a family of healthcare databases and related software tools and products developed through a Federal-State-Industry partnership and sponsored by the Agency for Healthcare Research and Quality (AHRQ). HCUP includes the largest collection of longitudinal hospital care data in the United States, with all-payer, encounter-level information beginning in 1988. These databases enable research on a broad range of health policy issues, including cost and quality of health services, medical practice patterns, access to healthcare programs, and outcomes of treatments at the national, State, and local market levels.

NIH All of Us

The NIH All of Us Research Hub matches a broad research community with a diverse set of research participants to advance precision medicine research and fuel new insights into human health. The All of Us Research Hub houses one of the largest, most diverse, and most broadly accessible datasets ever assembled. It also provides an interactive Data Browser where anyone can learn about the type and quantity of data that All of Us collects. Users can explore aggregate data, including survey responses, physical measurements, electronic health record information, and wearables data.

Registered users can use the Researcher Workbench to dive deeper into the data; conduct rapid, hypothesis-driven research; and build new methods for the future, using a variety of tools. The diverse data may help facilitate new studies that could help lead to new insights, treatments, and strategies for disease prevention that are tailored to individuals.

TriNetX

TriNetX is a valuable resource for accelerating the conduct of both investigator-initiated and industry research.TriNetX is a dynamic, data driven platform that leverages the i2b2 data warehouse and Cerner PowerChart (EHR). Employing a clean and easily navigable user interface, researchers can easily generate queries to perform study feasibility and cohort discovery. Additionally, TriNetX has the ability to perform analysis of the identified cohort and “estimated rate of arrival” projections.


REDCap

Research Electronic Data Capture (REDCap) is a mature, secure, HIPAA compliant, web-based application for building and managing online surveys and databases. It is the database platform of choice in all CTSA awarded institutions and for other institutions across the globe. REDCap is HIPAA compliant but you are still required to inform the IRB about using REDCap for your project. It is 21 CFR Part 11 ready, but does not meet the full requirements for 21 CFR Part 11 compliance. Please confirm with your sponsor, grant/funding source, etc. to confirm that REDCap is appropriate for use.

Why REDCap?
  • Build online surveys and databases quickly and securely: Create and design your project rapidly using secure web authentication from your browser. No extra software is required.
  • Fast and flexible: Conception to production-level survey/database in less than one day.
  • Export data to common data analysis packages: Export your data to Microsoft Excel, PDF, SAS, Stata, R, or SPSS for analysis.
  • Ad Hoc Reporting: Create custom queries for generating reports to view or download.
  • Scheduling: Utilize a built-in project calendar and scheduling module for organizing your events and appointments.
  • Survey Management: Easily manage a contact list of survey respondents or create a simple survey link. Build a list of email contacts, create custom email invitations, and track who responds, or you may also create a single survey link to email out or post on a website.
  • REDCap Mobile App: Collect data offline using an app on a mobile device when there is no WiFi or cellular connection, and then later sync data back to the server.
  • Secure file-share - Using 'Send-It', upload and send files to multiple recipients, including existing project documents, that are too large for email attachments or that contain sensitive data.
  • Save data collection instruments as a PDF to print: Generate a PDF version of your forms and surveys for printing to collect data offline.
  • Advanced features: Auto-validation, calculated fields, file uploading, branching/skip logic, and survey stop actions.
  • REDCap API: Have external applications connect to REDCap remotely in a programmatic or automated fashion.
  • Data Queries: Document the process of resolving data issues using the Data Resolution Workflow module.
  • Piping: Inject previously collected data values into question labels, survey invitation emails, etc. to provide a more customized experience.
REDCap Registration and 101 Online Training

Developed to support investigators during the COVID-19 pandemic, REDCap 101 Online Training is a virtual tour of the versatile REDCap database and survey tool offered through CTSI-CN. This series of online training videos, questionnaires, and exercises (roughly 2.5 hours of training) walks users through the powerful possibilities of REDCap and equips them to take advantage of all REDCap offers.

Register for REDCap 101 Online Training.

Best Practices
  • Real data should never be captured in projects that are still in Development Mode. In Development Mode, there are no safeguards in place to protect your data. If your REDCap project is currently capturing real data and you have not already done so, please move your project to production as soon as possible to prevent data corruption or permanent data loss:
    • Navigate to the Project Setup Page and click "Move project to production." When moving to production, you may request for existing data to be kept or deleted from the project. Please review your project’s records and check with your team members before confirming whether all test data should be deleted or retained.

  • Give yourself enough time to design and test your REDCap project before data collection begins:

    • Refer to the Codebook (left-hand toolbar) to review language, branching logic, calculated fields, code choices, etc.

    • Enable and test all features that will be used before moving to production (i.e., validations, survey features, longitudinal design, external modules, etc.).

      • Longitudinal Design: if you will be capturing information over time, you may enable Longitudinal Design. This will allow you to define your events and designate forms to each event.

      • Surveys: if your forms will be distributed to outside participants (who do not have REDCap access), the Survey feature will allow forms to be distributed via web link. Set up and test your survey settings, survey queue, automated survey invites, etc.

      • REDCap Shared Library: if you are using standardized measures that must be scored for analysis, check the REDCap Shared Library to see if auto-scored versions of these instruments are available for use.

      • Scoring: if your PI or statistical team has determined that your instrument(s) will need scoring within REDCap, but the scored instrument is not a part of the REDCap shared library, then you will need to create calculated fields to generate score values.

      • External Modules/Features: enable and test any external modules or complex features you plan to use (Twilio, Mutli-Language Management, Image map, Randomization, etc.)

    • Test the final version of each instrument as much as possible before moving to production. If you make modifications to an instrument, test it again!

    • Export a test dataset via Data Exports, Reports and Stats for review. Have your team’s statistician, data manager, or PI review the test dataset and codebook to ensure that data is captured in a way that will suit the intended analysis.

    • Review the User Rights page and ensure all team members have the appropriate user privileges.

  • Once data collection has begun, avoid risky project modifications, such as: 

    • Changing event names, field types, variable names, multiple-choice options, or regularly modifying Record IDs.

    • Removing events, fields, or multiple-choice options.

    • Changing the wording of existing questions or multiple-choice options in a way that changes the meaning of what is being captured (instead, add a new field or multiple-choice option to capture new information).

  • Back-up often: We recommend exporting your data dictionary and full dataset at regular intervals and saving it to your local study folder, especially before making any project changes:
    • Do not make full duplicates of your project (with data) as a means of backup (Project Setup --> Other Functionality tab --> “Make an exact duplicate of this project”).
    • Do export your full dataset as a raw .csv file via "Data Exports, Reports, and Stats" and save it to your study folder.
    • Do back up previous versions of your project structure by:
      • exporting and saving your data dictionary, or
      • downloading and saving your project as an xml file, with or without data depending on your needs (Project Setup --> Other Functionality tab --> “Download a backup of this project”).

Always refer to the REDCap Help and FAQ. (Note: Must be logged in REDCap to view this section). You can also watch our REDCap training videos for more information.

If you have any questions, please contact the REDCap Support team via our REDCap Support Request form. You can also access this form by clicking on the blue button titled “Contact Children’s National REDCap Support,” found on the REDCap home page and the bottom left-hand toolbar of every REDCap project.