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) (http://project-redcap.org) 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.