Frontiers launches CTSA Informatics Network, enabling easy, nationwide cohort discovery and data sharing
July 21, 2020
Over 125 million patient records can now be queried by Frontiers: University of Kansas Clinical and Translational Science Institute clinical researchers and study teams through the Accrual to Clinical Trials (ACT) Network to explore and validate patient cohorts and identify potential collaborators for investigator-initiated single- and multi-site clinical trials.
"The ACT Network will let you do the same study feasibility queries done today with HERON for the University of Kansas Health System but against the i2b2 databases across the entire CTSA consortium, all from the comfort of your office," said Russ Waitman, PhD, Director, Center for Medical Informatics and Enterprise Analytics and Associate Vice Chancellor for Enterprise Analytics at the University of Kansas Medical Center. "This can be valuable as preliminary data for grant proposals and clinical trial estimation."
The ACT Network, which was developed by the National Institutes of Health National Center for Advancing Translational Sciences (NCATS), is open access and available to researchers at all Frontiers partner institutions at no cost once access has been requested. Currently, 48 CTSA hubs are live on the ACT Network, with this number expected to increase to 57 hubs (nearly 100% of the CTSA national consortium) later in 2020.
"Access to ACT will help investigators perform large scale database research and find information on patients across the entire CTSA hubs. This will speed the ability to perform clinical trials across sites or for rare conditions where you need to look beyond one location. I am excited that Dr. Waitman and the Center for Medical Informatics has brought this additional tool for our investigators in Frontiers," said Mario Castro, MD, MPH, Director, Frontiers: University of Kansas Clinical & Translational Science Institute and Chief of Pulmonary, Critical Care and Sleep Medicine at University of Kansas Medical Center.
Researchers can run real-time queries on de-identified patient data in the ACT Network through the i2b2 tool's multi-site Shared Health Research Information Network (SHRINE). The user-friendly interface makes it simple to "drag-and-drop" selected query criteria, and users can save query logic and previous selections to return to later. Results are shown in real time and are easily accessible from users' desktop.
"I've used ACT for our funded NIH Down Syndrome study as well as to help plan Amyotrophic lateral sclerosis trials with neurology. This has helped us select partner sites for multicenter trials as well as for data partners in observational studies," Waitman said.
The ACT Network is HIPAA compliant and pre-approved by the University of Kansas Medical Center's Institutional Review Board (IRB) and does not require study-specific IRB approval.
While i2b2 is a self-service tool for investigators, access to the ACT Network on i2b2 requires registration. Researchers and study teams interested in querying data across the ACT Network should contact the medical informatics team at email@example.com. Training sessions take place from noon to 1 PM on the 2nd and 4th Tuesday each month. All training sessions are currently being held virtually; registration is required.
Jul 21, 2020