Datasets available for clinical research

TriNetX, the state-of-the-art end-user query tool that allows users to search de-identified clinical patient data for feasibility, recruitment, and project enrollment, is available to University at Buffalo researchers through the Institute for Healthcare Informatics (IHI). Using TriNetX, investigators have access to data from more than 1 million patients' electronic health records (EHRs) at no cost.

“Researchers can query UB|MD and Kaleida Health data to identify patient cohorts,” says UB Chief Research Information Officer Jonathan Blaisure. “It is a self-service tool that uses a modern web interface to easily traverse medical terminologies to create an inclusion-exclusion criteria that filters the patients.”

Blaisure explains that TriNetX is available pre-Institutional Review Board (IRB) approval, and offers a quick and easy way to query our datasets at the IHI. “Researchers have access to basic demographics and de-identified summaries of the identified patient cohort. We believe this saves a lot of time by allowing researchers to have visibility into the data available.”

IRB approval is necessary for data extraction, Blaisure says. “Once the researcher has determined they have sufficient data to pursue their research, we are able to map their patient cohorts back to identified patient records.”

In addition to datasets from the majority of the Western New York population, TriNetX offers many national datasets that can be queried. “Upon IRB approval, these datasets can also be downloaded, as a de-identified dataset, upon request,” Blaisure says. Extracted data is held securely at the IHI and made available to researchers through secure remote access.

Data is continually being added to the IHI repository and in turn integrated into TriNetX. And as more data is added, the impact of TriNetX at UB becomes greater.

Mahmoud Nassar, MD, PhD, a fellow in the Division of Endocrinology, Diabetes and Metabolism in the Department of Medicine at the Jacobs School of Medicine and Biomedical Sciences, used the database in a recent study of GLP-1RA medications, such as those with brand names of Ozempic and Victoza. As explained in UBNow, researchers found these drugs do not put patients with a history of pancreatitis at increased risk for acute pancreatitis, and that the drugs may actually lower the risk for these patients.

The IHI helped Nassar get setup in TriNetX, and researchers were then able to identify 638,501 individuals with a history of acute pancreatitis.

"TriNetX has been instrumental in broadening the scope of our research by providing access to a vast network of real-world data,” Nassar explains. “This platform has empowered our team to address complex research questions across both large populations and rare diseases, helping us answer crucial clinical questions and receive prestigious awards. Without it, achieving these outcomes would have been much more challenging."

On the CTSI website, researchers and their teams can learn more about the IHI, as well as UB’s Clinically Integrated Healthcare Data Repository (CIDR), which holds electronic health record and claims data for most of the local population.

“By leveraging the CIDR, researchers can gain access to comprehensive and diverse datasets that enable a wide range of research endeavors,” says IHI Executive Director Peter Winkelstein, MD, MS, MBA, Chief Medical Informatics Officer, UBMD; Chief Medical Informatics Officer, Kaleida Health; and Professor, Department of Pediatrics, Jacobs School.

Sections on the CTSI website offer details on available EHR datasets, the types of services and support available to researchers, and the ways in which the IHI supports clinical trials. For inquiries about accessing EHR datasets and using TriNetX, reach out to the IHI via the CTSI service request portal.

The CTSI offers several resources for those seeking additional information on TriNetX, including recordings of two Open Research Office Sessions — “TriNetX” (from March 29, 2023) and “TriNetX: A Closer Look” (from April 24, 2024) — featuring TriNetX Healthcare Partnership Manager Matt Skowronek. Plus, the TriNetX website has a library of on-demand video webinars.