ACT Network Update

ACT Now: July 2018

Dear Colleagues,

The ACT Network held its first breakout session at the i2b2 tranSMART Foundation Harvard Symposium on June 28. The six-hour session included conversations lead by ACT’s SHRINE, i2b2, and data ontology teams to review the current network status, discuss best practices, and prepare for the future of participant re-identification. With over 40 participants from among the 48 CTSA institutions currently connected, staging or preparing to stage for ACT, the day included lively conversation around site related issues and overarching challenges across the network. Session recordings will be available online in the coming weeks, and we hope those of you who weren’t able to attend will find them interesting and informative.

In addition, three ACT Network sites have officially launched to local end users, with many others slated to launch throughout the summer and fall. In the coming months, we’ll use this space to highlight some of the local launch materials developed by ACT sites, as a way of sharing successfully launch practices across the network. In that spirit, we encourage you to review these announcements published in the last month:

• University of Minnesota CTSI press release and information page
• Duke CTSI press release

We encourage you to learn more about ACT on our national website, and to explore the local ACT websites (links available here). Finally, please review the updates below from our workgroups, as well as a short summary of our Regulatory workgroup’s role, members and goals for 2018.

Warmly,

Steve Reis (sreis@pitt.edu)
Gary Firestein (gfirestein@ucsd.edu)
Lee Nadler (lee_nadler@dfci.harvard.edu)
Bob Toto (robert.toto@utsouthwestern.edu)

About the ACT Network

  • 21 sites connected to the ACT Network.
  • 14 sites staging for connection to ACT.
  • 60 million estimated total patients represented in first 21 ACT sites.

 

Connected to ACT:

Staging for ACT:

ACT Pre-Staging:

Children’s National
Columbia University* Boston University Medical College of Wisc.
Duke University Johns Hopkins University Ohio State University
Emory Univ./Morehouse Univ. Mayo Clinic University at Buffalo
Harvard University* Mayo Clinic University of Illinois-Chicago
Indiana University New York University University of Kansas
Medical Univ. of South Carolina Penn State Univ. of Massachusetts
Northwestern University* U of Alabama at Birmingham* University of Miami
Oregon Health & Science University* U. of Ark. for Medical Sciences* University of New Mexico
Stanford University University of Kentucky Univ. of Southern California
University of California, Davis* UNC-Chapel Hill UT Houston
University of California, Irvine* UT Health San Antonio University of Washington
University of California, Los Angeles University of Utah Virginia Commonwealth
University of California, San Diego U of Wisconsin-Madison* Weill Cornell Medicine
University of California, San Francisco Vanderbilt University Medical Ctr.
University of Cincinnati Washington Univ. in St. Louis*
U of Colo/Children’s Hosp. Colorado*
University of Florida*
University of Minnesota
University of Pittsburgh*
UT Southwestern*

*sites currently represented in ACT workgroups

ACT Workgroup Spotlight: Regulatory

Members:

Gary Firestein, UCSD – lead
Eric Mah, UCSD – co-lead
Karen Allen, UC Irvine – co-lead

Role: The ACT Regulatory Work Group is responsible for providing regulatory guidance across the network. Work group members developed and keep updated the following documentation:

  • Regulatory manual on the i2b2 protocol
  • Regulatory guidance on the i2b2 cohort discovery tool
  • Human subjects determination guidance

Work group objectives for 2018 focus on the creation of guidance papers to support local participant identification facilitated by the i2b2 plugins that are currently in development.

This work group meets as needed – if you are interested in participating, please reach out to Elaina Sendro.

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