What is the ACT Network Data Explorer?

The ACT Network is a real-time platform allowing researchers to explore and validate feasibility for clinical studies across the NCATS Clinical and Translational Science Award (CTSA) consortium, from their desktops. ACT helps researchers design and complete clinical studies, and is secure, HIPAA-compliant and IRB-approved.

ACT was developed collaboratively by members of NCATS’ Clinical and Translational Science Award (CTSA) consortium, with funding from the NIH National Center for Advancing Translational Sciences.

Prior to ACT, the UC Research eXchange (UC ReX) and the UC ReX Data Explorer tool--initiated by the UC Office of the President (UCOP), UC BRAID--were developed as groundbreaking tools through a collaboration of the medical campuses and their Chief Information Officers and CTSAs. UC ReX provided over 14 million datasets until it was replaced by ACT, the new national sharing platform, in 2019.

Who is participating?

ACT plans to include all institutions that are part of the NIH-funded Clinical and Translational Science Award (CTSA) program. Click here for a list of connected sites.

What data is available through this tool?

Who can use the tool?

To access ACT, researchers must request an ACT account and complete training. Researchers must be affiliated with a UCLA principal investigator. 

To get started or for questions, please email act@mednet.ucla.edu.

Additional Resources

Training materials and background information about ACT is available on the ACT website.

View ACT How-To Resources
The resources page on the ACT website provides an overview for using ACT. These tutorials offer a quick-start guide to using the ACT Network, and tips for ACT users.

What does ACT stand for?

ACT is an acronym for Accrual to Clinical Trials.

What are the benefits of ACT? Why is it needed?

ACT helps clinical investigators conduct cohort discovery before a trial starts, to establish feasibility of a clinical protocol for grant applications, IRB submissions, etc. ACT also helps investigators identify additional sites for a clinical trial. By allowing investigators to thoroughly explore patient cohorts and potential sites before finalizing their clinical protocols, ACT increases the odds of successfully completing clinical trial recruitment.

Where do the ICD codes come from?

ICD codes are based on billing data from both inpatient and outpatient encounters.

Is each patient reported in ACT a unique patient?

Yes, each patient reported in ACT is unique to the corresponding institution. Whether a query consists of multiple ICD-9 codes, demographics, date restrictions, etc., each patient is only counted once.

Currently, if a patient has been admitted to more than one ACT-affiliated site, he/she will be counted as a separate patient at each institution. This may inflate the total patient count across all institutions, but the site-level count will remain unaffected.

How can I use ACT to recruit patients for my study?

ACT is a cohort discovery tool and, thus, will only provide patient counts for a specific query. To go further and receive identified patient data for recruitment purposes, you will need to follow the steps below:

1. Obtain patient counts from each of the sites using ACT.
2. Recruit co-investigators at each site from which you would like to receive identified patient data.
3. Obtain IRB approval from each institution from which you would like to receive identified patient data.
4. Each site will then obtain the list of patients from their respective CTSI to recruit patients.

ACT Terms of Query Access

Version 4.0 12-13-2017

This Terms-of-Query-Access Agreement is designed to permit approved users access to the NCATS Accrual to Clinical Trials (ACT) Network federated query tool for the purpose of requesting aggregate clinical data from participating organizations who are members of the ACT network.

Each Participating ACT Organization individually contributes and allows access to aggregate clinical data for research purposes only. By logging into UCLA's instance of ACT you certify that you understand and agree to all applicable terms contained herein.

• I assert that I am a member of the UCLA Health Faculty, supervised Fellow or Qualified Staff working under a qualified faculty member, and am:
• At or above Instructor level (Clinical and Research Fellows or doctoral students will be able to access cohort counts as approved by the Fellow’s or student’s designated faculty mentor) and Either primarily appointed by, contractually related to, on the medical staff of, or maintain a significant relationship with UCLA Health.
• The following provision applies only to supervised Fellows and Qualified Staff:
• I understand that I may only submit queries and obtain ACT data directly associated with the validated Query Topic specifically delegated to me by my supervising Qualified Faculty Member.
• I understand that as a Qualified Faculty Member, supervised Fellow, or Qualified Staff, (Please refer to the ACT Governance Document, Section 12, for responsibilities designating and overseeing Qualified Staff) I may collaborate with investigators who are not Qualified Faculty Members, supervised Fellows, or Qualified Staff in my institution under the following conditions:
• Our collaboration must be in my area of scientific expertise.
• I am the only individual who will be authorized to conduct actual queries.
• I assume full responsibility for adherence by my collaborator with the SHRINE Business Rules and will obtain and retain a signed copy of this Terms-of-Access Agreement to certify my collaborator's compliance with the SHRINE Business Rules.
• I understand that collaboration and/or sharing of primary data with unauthorized personnel outside of my institution without prior approval by the ACT Executive Committee is prohibited.
• I understand that my ACT Network Site has agreed to comply with the ACT Network Site Policies under which access to clinical data is allowed and that my employing institution will hold me accountable for following these policies.
• I understand that my usage of the ACT resource is recorded and monitored, and that this usage data may be included in publications or scientific presentations. I understand that the ACT network will not identify me by name in publications without my permissions, but that it cannot guarantee user anonymity because query patterns may be unique.
• I further acknowledge the additional level of ethical sensitivity inherent in accessing data from institutions and patients other than my employing institution and agree to exercise exemplary ethical conduct when so doing. This includes but is not limited to the following specific issues:
• I agree to restrict requested query topics and associated individual queries to bona fide research issues.
• I will not formulate queries that could be used for competitive institutional or individual advantage.
• I agree not to attempt to identify any individual or set of patients contained in the aggregate data.
• I understand that sample sizes will be obfuscated +/- 10, rounded to the nearest 5, and sizes smaller than 10 will not be returned in order to prevent inadvertent identification of the sampled patients.
• I understand that publications based on research using the ACT Network must cite the NCATS ACT and NCATS UCLA CTSI grants: “This project was supported by the National Institutes of Health through Grant Number UL1TR001857 (ACT) and Grant Number UL1TR001881 (UCLA CTSI).”
• I understand that any Intellectual Property derived from use of the ACT Network must cite the NCATS ACT and NCATS UCLA CTSI grants: “This project was supported by the National Institutes of Health through Grant Number UL1TR001857 (ACT) and Grant Number UL1TR001881 (UCLA CTSI).”
• I understand that all appropriate institutional, state and federal policies, laws and regulations governing specially protected information will apply.
• I understand that any violation of this agreement will subject me to disciplinary action by my institution in consultation with the appropriate office.