Implementing Cancer Registry Data With the PCORnet Common Data Model: The Greater Plains Collaborative Experience.

Autor:	McDowell BD; Holden Comprehensive Cancer Center, University of Iowa, Iowa City, IA., O'Rorke MA; Department of Epidemiology, University of Iowa, Iowa City, IA., Schroeder MC; University of Iowa, Iowa City, IA., Chrischilles EA; Department of Epidemiology, University of Iowa, Iowa City, IA., Spinka CM; University of Missouri, Columbia, MO., Waitman LR; University of Missouri, Westwood Hills, KS., Anuforo K; Kansas University Medical Center, Kansas City, KS., Araya A; University of Texas, Houston, TX., Bah H; University of Utah, Salt Lake City, UT., Barlocker J; University of Utah Health, Salt Lake City, UT., Chandaka S; Kansas University Medical Center, Kansas City, KS., Cowell LG; O'Donnell School of Public Health, University of Texas Southwestern Medical Center, Dallas, TX., Geary CR; University of Nebraska Medical Center, Omaha, NE., Gupta S; Washington University, Saint Louis, MO., Horne BD; Intermountain Heart Institute, Intermountain Health, Salt Lake City, UT., Knosp BM; University of Iowa, Iowa City, IA., Lai AM; Washington University, St Louis, MO., Mandhadi V; University of Missouri, Columbia, MO., Mohammad Mosa AS; University of Missouri, Columbia, MO., Reeder P; University of Texas Southwestern Medical Center, Dallas, TX., Ryu G; Institute for Clinical and Translational Science, University of Iowa, Iowa City, IA., Shukwit B; University of Texas, Houston, TX., Smith C; Allina Health, Minneapolis, MN., Stoddard AJ; Medical College of Wisconsin, Milwaukee, WI., Syed M; Department of Population Health Sciences, University of Texas Science Center at San Antonio, San Antonio, TX., Syed S; University of Texas Science Center at San Antonio, San Antonio, TX., Taylor BW; Medical College of Wisconsin, Milwaukee, WI., VanWormer JJ; Marshfield Clinic Research Institute, Marshfield, WI.
Jazyk:	angličtina
Zdroj:	JCO clinical cancer informatics [JCO Clin Cancer Inform] 2024 Dec; Vol. 8, pp. e2400196. Date of Electronic Publication: 2024 Dec 17.
DOI:	10.1200/CCI-24-00196
Abstrakt:	Purpose: Electronic health records (EHRs) comprise a rich source of real-world data for cancer studies, but they often lack critical structured data elements such as diagnosis date and disease stage. Fortunately, such concepts are available from hospital cancer registries. We describe experiences from integrating cancer registry data with EHR and billing data in an interoperable data model across a multisite clinical research network. Methods: After sites implemented cancer registry data into a tumor table compatible with the PCORnet Common Data Model (CDM), distributed queries were performed to assess quality issues. After remediation of quality issues, another query produced descriptive frequencies of cancer types and demographic characteristics. This included linked BMI. We also report two current use cases of the new resource. Results: Eleven sites implemented the tumor table, yielding a resource with data for 572,902 tumors. Institutional and technical barriers were surmounted to accomplish this. Variations in racial and ethnic distributions across the sites were observed; the percent of tumors among Black patients ranged from <1% to 15% across sites, and the percent of tumors among Hispanic patients ranged from 1% to 46% across sites. Current use cases include a pragmatic prospective cohort study of a rare cancer and a retrospective cohort study leveraging body size and chemotherapy dosing. Conclusion: Integrating cancer registry data with the PCORnet CDM across multiple institutions creates a powerful resource for cancer studies. It provides a wider array of structured, cancer-relevant concepts, and it allows investigators to examine variability in those concepts across many treatment environments. Having the CDM tumor table in place enhances the impact of the network's effectiveness for real-world cancer research.
Databáze:	MEDLINE
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