We are privileged to acknowledge Istituto Romagnolo per lo Studio dei Tumori Dino Amadori (IRST) for their valuable collaboration with TriNetX.
IRST, the first Italian healthcare organization (HCO) to utilize the TriNetX LIVE™ platform, is leveraging the power of TriNetX’s real-world data (RWD) and tools to the fullest – from defining target patient groups, aligning with research proposals, fostering in-house research efforts, publishing studies, and more.
Read on to explore the remarkable achievements IRST has accomplished through our partnership.
1. Why did you join the TriNetX network?
We joined TriNetX because we have always believed in the power and importance of data in advancing healthcare research. Research is a fundamental aspect of our work at IRST, and our biostatistics unit has consistently been dedicated to supporting clinical research activities.
TriNetX has proven to be an invaluable tool for identifying cohorts, connecting with research proposals, and stimulating internal research initiatives. The idea, first introduced through the InSite project and later validated with TriNetX, of truly utilizing available data through standardization, aligns perfectly with the mission and longstanding practices of our institute.
2. What are your use cases for TriNetX?
We continue to use TriNetX RWD, tools, and services to:
- Conduct cohort research to identify specific patient populations for studies. In the last year, nine users of the TriNetX LIVE™ platform conducted nearly 500 queries.
- Evaluate research proposals from sponsors to ensure alignment with our clinical research goals. IRST has received 30 cumulative clinical trial opportunities, and we have commenced work with two strategic sponsors.
- Enhance our capacity to extract and analyze data collected over nearly 18 years in our electronic health record (EHR) system. This helps us leverage our rich dataset for comprehensive research and analysis.
3. How do you envision growing your partnership with TriNetX?
Into the future, we hope to maximize our expansion with TriNetX by:
- Increasing accessibility to TriNetX for all our researchers to facilitate widespread use and integration into daily research activities. Users of the platform are associated with different units inside the HCO (e.g., Data Unit, Biostatistics and Clinical Trials Unit, Department of Medical Oncology, Outcome Research Unit).
- Implementing genetic variant data to support personalized medicine research.
- Incorporating cardio-oncology data to expand our research capabilities in this emerging field.
- Using TriNetX as a preliminary tool for data collection and analysis to support publication efforts.
- Engaging in discussions with our Ethics Committee to streamline access to the data available on TriNetX, ensuring ethical and efficient use.
- Creating or joining a national or European network to foster collaboration and expand our research opportunities on a larger scale.
4. How many papers have been published with TriNetX since joining our network?
IRST has recently published their first paper on endometriosis and endometrial cancer utilizing TriNetX RWD. This work was presented at the European Society of Gynecological Cancer conference in 2023 by Dr. Alberto Farolfi and won the ENYGO Young Investigator Award for the abstract entitled, #434 Association between endometriosis and endometrial cancer: a real-world evidence study. The research was also presented during the TriNetX EMEA Symposium held in September 2024.
In addition, an abstract entitled, Risk of myelodysplastic syndrome (MDS) and acute myeloid leukemia (AML in real-world ovarian cancer (AOC) patients treated with first- or second-line maintenance PARP inhibitors (PARPi), has been selected for oral presentation and was presented in a plenary session at the International Gynecologic Cancer Society-IGCS 2024.
There are many ongoing projects led by different users of the TriNetX LIVE™ platform associated with different units inside the HCO: Data Unit, Biostatistics and Clinical Trials Unit, Department of Medical Oncology, Outcome Research Unit, and more.
“The success of our initiative with TriNetX is the result of the synergy between TriNetX professionals and the different units and personnel in IRST: the Biostatistics and Clinical Trial Unit, the Data Unit, the Outcome Research Group, the ICT Service, the Research Office, clinicians, and other healthcare professionals. The partnership demonstrates how consolidated skills in the conduct of clinical studies can be enhanced thanks to the support of IT and data science functions. Our collaboration has made it possible to network the various actors involved, including privacy and legal services, identifying the most suitable technical solutions.”
— Dr. Nicola Gentili, Data Unit Coordinator at IRST IRCCS Hospital