TriNetX

TriNetX uses International Classification of Diseases (ICD) codes, Logical Observation Identifiers Names and Codes (LOINC), and Current Procedural Terminology (CPT) codes in its searches.

The following links provide lookup tables for these codes:

• ICD-9 Diagnosis and Inpatient Procedures (for data prior to October 2015)
• ICD-10 Diagnosis and Inpatient Procedures (for data after October 2015)
• LOINC
• CPT codes (for outpatient procedures)

The TriNetX tentative date refresh schedule for the 2024 calendar years is as follows:

Stage Refresh: 1st Saturday of each Month (6 a.m.)

Production Refresh: 2nd Saturday of each Month (Noon)

For general technical help, or to report an issue with Clinical and Translational Science Institute applications including TriNetX, call 833-577-4357 or email help@pennstatehealth.psu.edu.

For account help, go to Research Population Portal.

For help with queries, please complete a service request form.

TriNetX datasets include clinical patient data such as demographics, diagnoses, procedures, labs and medications – commonly referred to as real-world data.

The data in TriNetX datasets are:

• Primarily from healthcare organizations electronic medical record (EMR) systems
• Collected for the primary purpose of providing care to patients

The data in TriNetX datasets are not:

• Claims data, data primarily collected for billing
• Data collected for randomized clinical trials

Data in TriNetX datasets comes from health care organizations and other data providers. The data these entities provide primarily come from:

• EMR systems
  • Structured data
  • Unstructured data processed by Natural Language Processing technology
• Cancer registries
• Other sources like genomic data from third-party genomic testing labs

The majority of the health care organizations are large academic medical institutions with both inpatient and outpatient facilities. Most of these are adult acute-care hospitals with multiple facilities and locations. All are currently located within the United States and provide TriNetX with both inpatient and outpatient data. The data they provide represents the entire patient population at the health care organization. Most provide an average of seven years of historical data.

TriNetX typically receives data from health care organizations and other data providers in one of two ways:

• TriNetX receives data directly from a health care organization research repository into the TriNetX environment.
• A health care organization or data provider sends TriNetX data extracts in the form of CSV files TriNetX Data Dictionary.

TriNetX maps the data to a standard and controlled set of clinical terminologies and transforms it into a proprietary data model. This transformation process includes extensive data quality assessment that includes data cleaning that rejects records that don’t meet the TriNetX quality standards.

One of the distinguishing characteristics of the TriNetX dataset is that it is continuously refreshed. Health care organizations and other data providers update their data at various times, with over 80 percent refreshing in one-, two or four-week frequency intervals. The average lag time for a health care organization’s source data refresh is one month.

TriNetX supports five collaborative networks specifically for Health Care Organizations (HCOs) to anonymously pool their de-identified data. In doing so, each HCO gains research access to a broader patient population making research into rarer diseases and treatment regimens much more feasible.

HCOs participating in the TriNetX regional collaborative networks contribute their de-identified patient data to two networks:

• the regional collaborative network corresponding to the HCO’s location (United States, Europe, Middle East and Africa, Latin America or Asia Pacific) and
• The Global Collaborative Network, which gathers together the data from all participating HCOs

HCOs who are already members of the Research Network, which supports data downloads, are added to the regional collaborative network corresponding to their location as well as to the Global Collaborative Network.

TriNetX users from participating HCOs may:

• Run queries and build cohorts on any regional collaborative network, including the Global Collaborative Network
• Run basic and advanced analytics on those cohorts

HCOs on regional collaborative networks are anonymous. The platform will not display the number of patients contributed by a particular HCO (either by name or pseudonym) to any cohort. Dataset downloads are not permitted on regional collaborative networks. The Research Network does support data downloads while maintaining HCO anonymity.

Global

Number of HCOs: 74
Countries (number of HCOs): Australia (1), Brazil (5), Bulgaria (1), Germany (1), India (1), Italy (1), Lithuania (1), Malaysia (1), Poland (2), Singapore (1), Spain (3), Taiwan (1), United Kingdom (8), USA (47)
Number of Patients: 88 million

United States

Number of HCOs: 47
Countries (number of HCOs): USA (47)
Number of Patients: 73 million

Europe, Middle East and Africa

Number of HCOs: 17
Countries (number of HCOs): Bulgaria (1), Germany (1), Italy (1), Lithuania (1), Malaysia (1), Poland (2), Spain (3), United
Kingdom (8)
Number of Patients: 10.8 million

Latin America

Number of HCOs: 5
Countries (number of HCOs): Brazil (5)
Number of Patients: 2.3 million

Asia-Pacific

Number of HCOs: 5
Countries (number of HCOs): Australia (1), India (1), Malaysia (1), Singapore (1), Taiwan (1)
Number of Patients: 3.2 million