Information last updated: 03/01/2023
ACCESS AND GENERAL INFORMATION
ENACT will build upon the structure of the ACT Network to develop and implement new informatics tools for EHR research; serve as a platform for tool development by informaticians and statisticians across the Consortium; improve the quality of the existing structured data; incorporate data extracted from clinical text using natural language processing (NLP); and enable both federated and centralized statistical and machine learning-based analyses. Its development is funded by the NIH through the National Center for Advancing Translational Sciences (NCATS) and the Clinical and Translational Science Award (CTSA) program. It contains over 150 million patient records, and ~90% of the CTSA consortium.
ENACT is an acronym for Evolve to Next-Gen ACT where ACT was the previous Accrual to Clinical Trials.
The ACT Network helped clinical investigators conduct cohort discovery before a trial starts, to establish feasibility of a clinical protocol for grant applications, IRB submission, etc. It also helped investigators identify additional sites for clinical trials. By allowing investigators to thoroughly explore patient cohorts and potential sites before finalizing their clinical protocols, ACT increased the odds of successfully completing clinical trial recruitment.
ENACT will build upon the initial ACT Network framework to expand the ability to conduct EHR research, introduce data quality standards, and make available new informatics tools. It also provides a network for investigators to leverage for other funding opportunities.
ENACT is available to all researchers at participating CTSA institutions. Researchers may also designate members of their research staff to access ENACT on their behalf.
Click here to see which institutions have joined ENACT, and which institutions will join in future waves. Ultimately, ENACT plans to include all institutions that are part of the NIH-funded Clinical and Translational Science Award (CTSA) program.
CTSA hub partner sites, Institutional Development Award (IdEA) sites, and Research Center in Minority Institutions (RCMI) are also invited to participate in ENACT.
The ENACT Network queries the total numbers of patients at each participating site meeting your inclusion or exclusion criteria for demographics (age, gender, race, etc.), diagnoses (ICD9/10 codes), lab results, and most frequently prescribed medications. Not all data points are available for all patients.
View the current ENACT Network Ontology & Data Dictionary
Additional data elements are added on an annual basis to stay current with investigator needs. New data elements for 2023 include updates to social determinants of health and additional labs.
USING ENACT
To request access to ENACT, please contact your local CTSA.
Contact your institution’s ENACT Site Operations Coordinator (SOC) associated with the local CTSA. You can find this person’s contact information on your local ENACT landing page.
ENACT uses a limited data set and does not currently index text from medical records.
It depends on the size and complexity of your query, and on the responsiveness of local ENACT sites. Currently, the ENACT web client automatically times out requests that take longer than 3 minutes to return results. If your query is timing out, try reducing the number of variables, then adding them back incrementally. You can also set a custom timeout for a shorter duration to reduce wait times.
There are several reasons for a non-numerical result:
“10 patients or fewer”: ENACT will never return a number fewer than 10 to protect patient confidentiality. To increase the number of matching patients, you may try reducing the number of variables or expanding the criteria in your query.
“Results Not Available”: indicates that the results weren’t returned quickly (timed out) and your query is likely queued for processing. Results may be available minutes to hours later – to see if full results are available, look in your archived queries. You may also choose to reduce the number of variables to speed processing time.
Other error messages: indicate connectivity, data, or other technical issues at that site. Each ENACT site runs data connectivity checks (and troubleshooting) daily, so it’s likely that trying your query again later will resolve the problem.
ENACT provides an approximate count of the number of patients meeting the query criteria. Counts are intentionally approximate (+/-10 for each institution) in order to protect patient confidentiality. So, if you run the same query more than once, you will receive slightly different results each time. Identifiable patient data is never returned. If you would like to find out more about the obfuscation process please see "A Security Architecture for Query Tools used to Access Large Biomedical Databases" (Murphy, SN and Chueh, HC, Proc AMIA Symp. 2002:552-6).
The accuracy of query results also depends on the accuracy of data mapping at each institution; although the ENACT Network uses uniform mapping processes, some variability across institutions may exist.
The ENACT Network relies on a common set of data coding practices, which are not identical with data coding practices at any specific site. Therefore, some detail is inevitably ‘lost in translation’ to the larger ENACT Network. We recommend that you use ENACT for big-picture queries, then use local EHR query tools to explore local patient cohorts more thoroughly.
If you identify a site of interest for your trial and need help finding a potential co-PI, contact the institution’s CTSA Trial Innovation Network liaison for help.
Contact your site’s ENACT Data Steward. You can find this person’s contact information via your local CTSA.
In order to remain in compliance with local IRB procedures, all patient recruitment must occur locally, by local clinical investigators. ENACT is currently developing and testing plug-ins to assist in local re-identification of eligible patients.
GOVERNANCE AND DATA SECURITY
The ENACT Network only shares aggregate patient counts, and never shares (or accesses) patient data. Each site monitors and reports on local usage of the ENACT Network to ensure compliance with the ENACT Data Use Agreement.
Learn more about institutional governance and regulatory topicsYes. Part of the ENACT implementation process at each site involves applying for approval from the site's IRB.
Learn more about institutional governance and regulatory topicsPublications based on research using the ENACT Network must cite the NCATS ENACT grant: "This project was supported by the National Institutes of Health through grant 1U24TR004111-01." Publications should also cite the appropriate CTSA Hub grant numbers from participating institutions.
Any Intellectual Property derived from use of the ENACT Network must cite the NCATS ENACT grant: "This project was supported by the National Institutes of Health through grant 1U24TR004111-01."
Publications in which data source partners (hospitals) are to be identified by name will be reviewed for use of name only by each identified hospital prior to submission of a manuscript. At no time will specific participating data source partners be named unless explicitly approved by the data partner. Such approval must be requested and received in writing between the requestor and the Senior Vice President of Research, the Chief Information Officer, or their respective designee. Any entity (e.g., hospital) that does not agree to be identified by name as a data source will be instead identified as a "CTSA-affiliated hospital."