When publishing using data from the TriNetX network or TriNetX as a method, the following guidelines must be adhered to:
Network to be used
The primary TriNetX data network for scientific use and publications is TriNetX Research. In reasonable exceptional cases (e.g., if the topic of the project is related to clinical trials or validation of the network for use in clinical trials), TriNetX Live can be used.
Use of the appropriate network
Contracts with TriNetX member HCOs do not always allow the use of their data for publications. Therefore, during review of the manuscript and discussion with the author, clarification should be sought whether the appropriate network was used for the scientific project to be published.
Information not to disclose
Unless the publication is initiated and authored by a Healthcare Organization (HCO), no HCO-specific data should be shown in any publication, not even in an anonymized way (e.g., “site 1, site 2, site 3, etc.”). All results must be shown as aggregated statistics only.
TriNetX should be mentioned in the methods section.
A suggested adequate general description would read like:
If a TriNetX platform with browser-based real-time analytical features was used:
“….We used TriNetX, a global federated health research network providing access to statistics on electronic medical records (diagnoses, procedures, medications, laboratory values, genomic information) from approximately xy Million patients in yz large Healthcare Organizations predominately. As a federated network, TriNetX received a waiver from Western IRB since only aggregated counts, statistical summaries of de-identified information, but no protected health information is received, and no study-specific activities are performed in retrospective analyses…”
If a dataset, downloaded from TriNetX, was used:
“….TriNetX, a global health research network provided an anonymized dataset of electronic medical records (diagnoses, procedures, medications, laboratory values, genomic information) from xy patients with [cohort definition], predominately from the USA. No protected health information was received, and no study-specific activities were performed in retrospective analyses…”
This general description should be followed by a description of the actual methods used including the date of the data download or when the analytics were performed.