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URMC / Clinical & Translational Science Institute / Stories / October 2020 / UR CTSI Broadens Patient Cohort Discovery Capability at UR Through ACT Network

UR CTSI Broadens Patient Cohort Discovery Capability at UR Through ACT Network

Map showing ACT sites across the United StatesThe UR CTSI has partnered with the Accrual to Clinical Trials (ACT) Network to bring real-time cohort exploration and discovery to University of Rochester researchers. Through the network, researcher can query de-identified data from 125 million patient records to validate the feasibility of their clinical trials or identify potential collaborating institutions for multi-site trials.

The ACT Network can be used in conjunction with UR CTSI’s existing local cohort discovery tool, TriNetX, which was launched last year. While TriNetX allows researchers to determine if there are enough local patients that meet their study criteria, the ACT Network provides options for studies that would not be feasible if they relied solely on the local population. 

“We expect the ACT Network to open up a whole new realm of possibilities for initiating multi-site clinical trials here at the University of Rochester,” said UR CTSI Informatics Director Jeanne Holden-Wiltse. “This tool will help us do more clinical trials that can positively impact people with rare diseases or complicated constellations of conditions.”  

Developed by the Clinical and Translational Science Awards (CTSA) Program, the ACT Network offers open-access to a national network of leading academic medical research centers. With the addition of the UR CTSI, the network includes 48 CTSA Program institutions, with nine more set to join by the end of the year. With that immense level of collaboration, the network now represents over 125 million patients across the US.

Researchers can access aggregate patient count data in real-time on their own desktops using the ACT Network’s user-friendly web interface. Simply “drag-and-drop” selected query criteria, and save query logic and previous selections to return to later.

The ACT Network is HIPAA compliant and never shares or accesses patient data. Rather, researcher run queries on de-identified patient data for criteria like demographics, diagnoses, lab results, most frequently prescribed medications, and newly-added terms specific to COVID-19.

Because the ACT Network is pre-approved by the UR Research Subjects Review Board (RSRB), it does not require study-specific RSRB approval. However, researchers must complete training and register to access the network.

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TriNetX and the ACT Network are both supported by the University of Rochester CTSA award number UL1 TR002001 from the National Center for Advancing Translational Sciences (NCATS) of the National Institutes of Health. The ACT Network is also supported by the University of Pittsburgh CTSA award number UL1TR001857 from NCATS.

Michael Hazard | 10/7/2020

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