ACT Network Update

ACT Now: 
November/December 2018
ACT Network Update

Dear Colleagues,

We’re listening. We are offering two new informational webinar sessions:
What’s New for 2019 
Date: Wednesday, December 5, 12-1 pm EST.
During this call, we’ll review our high-level goals for the ACT Network in 2019, and preview our plans for i2b2 and SHRINE upgrades, the new ACT data ontology, and the continued dissemination of ACT throughout the CTSA consortium. For details on joining the webinar, please contact Elaina Sendro. The webinar will be recorded for those who can’t attend in real time.
Integrating ACT into CTSA Hub Services. 
Date: First quarter of 2019
Many thanks to those of you who provided input on topics for our new series of “fireside chats,” designed to spotlight the approaches and achievements of ACT sites, and to share best practices across the ACT Network. Please look for more information about this event in January!
Best wishes for a peaceful and happy holiday season, and looking forward to continuing to work with you in 2019.


Steve Reis (
Gary Firestein (
Lee Nadler (
Bob Toto (

About the ACT Network

  • 32 sites connected to the ACT Network.
  • 16 sites staging for connection to ACT.
  • 100 million estimated total patients represented in first 32 ACT sites.
Connected to ACT: Connected to ACT: Staging for ACT:
Boston University
Children’s National
Columbia University*
Duke University
Emory Univ./Morehouse Univ.
Harvard University*
Indiana University
Johns Hopkins University
Mayo Clinic
Medical Univ. of South Carolina
New York University
Northwestern University*
Oregon Health & Science Univ.*
Stanford University
Univ. of Alabama at Birmingham*
Univ. of Ark. for Medical Sciences*
University of California, Davis*
University of California, Irvine*
University of California, Los Angeles
University of California, San Diego
University of California, San Francisco
U of Cincinnati/Cincinnati Children’s
U of Colo/Children’s Hosp. Colorado*
University of Florida*
University of Kentucky
University of Minnesota
UNC-Chapel Hill
University of Pittsburgh*
UT Health San Antonio
UT Southwestern*
Vanderbilt University Medical Center
Washington Univ. in St. Louis*
Medical College of Wisc.
Ohio State University
Penn State
University at Buffalo*
University of Illinois-Chicago
University of Kansas*
Univ. of Massachusetts
University of Miami
University of New Mexico
Univ. of Southern California
UT Houston
University of Utah
University of Washington*
U of Wisconsin-Madison*
Virginia Commonwealth
Weill Cornell Medicine

*sites currently represented in ACT workgroups

ACT Workgroup Updates


With the majority of production sites now fully functional on SHRINE 1.25.4, the technology work group is focusing on rollout education and strategies for the i2b2 plugin technology that will assist in participant re-identification inn 2019.

Data Harmonization

The next version of the ACT ontology, v2.0, is currently in the ACT test network. A production rollout is expected in early 2019. More information will follow in the next newsletter and through the technology email listserv.


Final revisions to the governance document are nearing completion, and include updated ACT functions, network operations, and considerations for the i2b2 plugins for participant re-identification. Additionally, the work group is focusing on appropriate guidance and paths forward for possible end user access by affiliate institutions.


The Evaluation team has begun qualitative interviews with data stewards and end users at active ACT sites to learn more about local experiences and identify opportunities for improving ACT. The Dissemination team is continuing to support sites from waves 1, 2 and 3 as they launch ACT to local end users.

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