Federated research network platforms such as TriNetX and the Accrual to Clinical Trials (ACT) Network facilitate cohort discovery for study feasibility and design. Virginia Commonwealth University has joined the ACT Network, providing investigators with the ability to query across all Clinical and Translational Science Award (CTSA)-funded institutions. Subsequent re-identification of cohorts for data provisioning is also available to investigators.
|Explore Patient Populations||Find Partner Sites|
|Learn about your patient population in depth and in real time, from your desktop.||Search for patients across the CTSA network to identify potential partners for multi-site studies.|
|Check Feasibility of Clinical Studies||Demonstrate Feasibility|
|Interactively test and refine inclusion and exclusion criteria to confirm the feasibility of your clinical study.||Access easy-to-download results for use in funding proposals and Institutional Review Board submissions to demonstrate the feasibility of your clinical study.|
The success of clinical research and clinical trials depends on enrollment of appropriate participants. Finding participants who meet increasingly stringent inclusion and exclusion criteria is often a challenge for investigators. To address this challenge, VCU is partnering with TriNetX to proactively enhance study feasibility, improve study design and reach participants who may qualify for a particular study.
The VCU/TriNetX partnership provides VCU research teams with:
The ACT Network is a real-time platform that allows researchers to explore and validate feasibility for clinical studies across the National Center for Advancing Translational Sciences CTSA consortium, from their desktops. ACT helps researchers design and complete clinical studies, and is secure, HIPAA-compliant and IRB-approved. The ACT Network is a nationwide federation of leading academic research institutions that share aggregate patient counts from electronic health record data. Its development is funded by the National Institutes of Health through the NCATS and CTSA programs.
TriNetX allows VCU researchers to query the VCU Health electronic health record system (Cerner), IDX, OnCore, and Tumor Cancer Registry for a specific potential participant population in a de-identified manner for study feasibility and to help with study design.
ACT was developed by members of the CTSA network to enable cohort discovery using a web interface in a HIPAA-compliant manner, without requiring study-specific IRB approval. It offers open access to a national network of leading academic medical research centers and generates aggregate patient count data from an investigator's real-time, iterative searches. Using ACT, researchers can explore patient populations, confirm and demonstrate study feasibility and identify potential partners for multi-site studies.
|Cost||Free||Free||Complex queries involving analyst support may incur fees.|
|Ease of Use||Easy to Moderate||Moderate to Difficult||Query dependent.|
|User Account Needed||Yes||Yes||ACT and TriNetX accounts must be requested through the Federated Health Research Network access request form. Must be a VCU staff, faculty, student or affiliate.|
|Query Sharing||Yes||No||The ability to share a query and view criteria.|
|Query History||Yes||Yes||The ability to load a previous query and view results.|
|Query Design Assistance||Vendor Provided||Not Vendor Provided||The ability to contact the vendor for query support and interpreting results.|
|Identified Data||Upon Request||Upon Request||Must request data through BIC support request form and provide written IRB approval (research).|
|Review Counts from Each Institution||Upon Request||Yes||Feature is pending from TriNetX. Contact TriNetX for more information on counts from each institution.|
|Breakdown Between Institutions||Upon Request||Yes||ACT allows for institutional breakdown of age, race, gender, and/or vital signs. Feature is pending from TriNetX.|