Available Resources

Accessing Data Products, Training Materials, and Documentation

Types of Data

De-identified Data Products

All data products made available through the TX-CTRN portal login are participant records which have been filtered to remove personally identifying information (PII/PHI) and are further deidentified through the following methods and transformations:

• Date of birth and dates of service are removed and replaced by “age at the date of the visit” calculated in months. These calculations are consistent with requirements for data publication through the National Institute of Health’s National Data Archive (NIH NDA),
• Data associated with location have been removed or aggregated into groups large enough to maintain individual anonymity. For example, ZIP codes may be truncated or removed entirely based on the number of individuals represented.
• Identifying demographics and fields with sparse data are removed or aggregated    

A Limited Data Set of data outside of the de-identified data products available on this TX-CTRN portal may be requested by researchers who meet the following additional requirements:

• Requested data elements listed with project justification within the signed DUA Addendum.
• Human Subjects Research Protection Training completion
• Local Human Research Program IRB determination letter

Requesting Access

To access resources within the CTRN portal, researchers must (1) execute a Data Transfer and Use Agreement (DUA) and then (2) submit an online Access Request.

A DUA is executed between the University of Texas Austin on behalf of the Dell Medical School TX-CTRN Hub and a research institution (or directly with a researcher if not affiliated with an institution). To submit a DUA to TX-CTRN, institutions can download this form and email the completed and signed document to texasctrn@austin.utexas.edu.

Note: DUAs can only be signed by Authorized Institutional Officials who have the authority to bind all users at their institution to the terms of the DUA.

The CTRN Data Access Committee will notify the researcher with instructions for logging into the website portal when the DUA and access request have been approved.

Code of Conduct

The Code of Conduct articulates fundamental actions and prohibitions on data user activities involving data or other resources accessible through the TX-CTRN Portal and reflects the terms and conditions outlined in the Data Use Agreement (DUA) entered into by Accessing Institutions and TX-CTRN. Failure to abide by any term within this Code of Conduct may result in revocation of approved access to the TX-CTRN Portal.

Investigators approved by the TX-CTRN Data Access Committee to access and use data within the TX-CTRN Portal agree to:

1. Use data only for research projects or comparative studies defined in the Data Use Agreement and Access Request approved by the TX-CTRN Data Access Committee.
2. Exercise responsible stewardship of data, software or other tools contained within the TX-CTRN Portal complying with all applicable laws, regulations or policies governing data use, data privacy and data security.
3. Make no attempt to identify institutions, communities or populations associated with TX-CTRN data to re-identify or contact participants or groups associated with data shared in the TX-CTRN Portal; or to generate information that could lead to reidentification of participants.
4. Not distribute or provide access to TX-CTRN data and materials for use or disclosure to any entity or individual beyond those specified in the approved DUA.
5. Notify and obtain approval from the TX-CTRN Publication Committee of intent to publish or disseminate research findings, analyses, methodologies or tools; acknowledge TX-CTRN and cite any sources used.
6. Report any Data Access Incident as defined in the DUA within 2 business days after discovery by sending an email to texasctrn@austin.utexas.edu.