Pediatric Research Resources Webpage
TriNetX is a web-based cohort creation database and retrospective research tool containing the same patient data housed in the IDR. Researchers can browse TriNetX through diagnoses, procedures, medications, laboratory results, and demographics, in a fully de-identified setting. TriNetX can provide information about patient facts and calculate the rate of arrival for patients within your defined parameters to assist in assessing the feasibility of a clinical trial or other prospective studies. WVCTSI has joined the TriNetX Research Network, which allows queries to be run against the 22+ organizations that comprise the Network, or against solely the WVU Medicine network. De-identified datasets can be obtained through TriNetX for queries run on the WVU Medicine network. Additionally, single-cohort outcomes analyses and two-cohort comparison analyses such as Odds Ratio/Risk Ratio and Kaplan-Meier analyses can be run within the TriNetX Analytics module, with more analytic capabilities to be added in the future.
TriNetX accounts are currently available only to WVU researchers; to receive an account, complete the Data Use and Confidentiality User Agreement in iLab. To request a TriNetX demonstration or training, please submit a Consultation Request via iLab. Currently, WVU Medicine patient data is uploaded into TriNetX on a quarterly basis. As our underlying data structure is updated, we anticipate being able to provide more frequent data updates to TriNetX in the future.
Integrated Data Repository (IDR)
The Integrated Data Repository (IDR) consists of WVU Medicine data beginning in 1994, with the most complete and accurate data starting in 2008, when WVU Medicine began using the Epic system for electronic health records. The IDR currently contains demographics, diagnoses, procedures, medications, and laboratory results for over a million patients.
With appropriate IRB approval, WVCTSI can provide fully identified data sets, Preparatory to Research data sets (which may not be used for research, only preparing for research), or a fully de-identified data set. If you are looking for aggregate patient counts for cohort feasibility, WVCTSI strongly recommends using TriNetX, a fully de-identified cohort identification and analysis platform. A flowchart outlining the data request process can be found here.
Please note that due to the intensive nature of IDR data requests, all IRB documentation must be provided before work can begin on any request. Additionally, all members of the research team must sign the Data Use and Confidentiality Agreement in iLab, before work can begin on any request. Meeting with a biostatistician or epidemiologist prior to submitting your data request is highly recommended, and may be required in some cases. WVCTSI provides data for research projects; data requests for QI projects must be directed to the hospital.
Professional Development Opportunities
The Professional Development Core of the WVCTSI provides a continuum of educational programs that addresses the individual needs of faculty, fellows, residents, health professionals, and graduate students. These services include, but are not limited to, a research seminar series, a certificate in clinical and translational science, a master’s and doctorate degrees in clinical and translational science, and the WVCTSI Research Scholar Program. More detailed descriptions of these services can be found here (http://www.wvctsi.org/programs/education-mentoring-career-development/).