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Novel Electronic Health Record-Based Data Commons for Pancreatic Cancer.

Kaleem S Ahmed1, Clayton T Marcinak1, Muhammad Maisam Ali1

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A new Pancreatic Cancer Data Commons (PCDC) centralizes electronic health records and national data, improving pancreatic cancer research. This resource enhances clinical data for better patient care and future studies.

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Area of Science:

  • Oncology
  • Biomedical Informatics
  • Health Services Research

Background:

  • Clinical research in pancreatic cancer (PC) is hindered by fragmented national datasets.
  • Electronic Health Record (EHR)-based data offers potential for comprehensive PC research.
  • A dedicated PC data resource is needed to advance understanding and treatment.

Purpose of the Study:

  • To describe the creation of an EHR-based data commons for pancreatic cancer (PC) patients.
  • To establish a centralized resource for granular PC data to support research.
  • To demonstrate the feasibility of integrating diverse data sources for PC research.

Main Methods:

  • Developed the Pancreatic Cancer Data Commons (PCDC) by linking institutional EHR data with six national datasets.
  • Included adult patients diagnosed with PC between 2010 and 2023.
  • Utilized the Observational Medical Outcomes Partnership (OMOP) common data model and ensured HIPAA/NIST compliance for data storage.

Main Results:

  • The PCDC contains data for 3,542 unique PC patients.
  • Data linkage improved cancer-specific data completeness from 31.3% to 71.6%.
  • Most patients were diagnosed at stage IV (43.6%), with 30.3% alive at the latest update.

Conclusions:

  • The PCDC addresses a critical gap in pancreatic cancer research by providing a centralized data resource.
  • Securely linking and analyzing patient data is crucial for advancing clinical research and optimizing PC patient care.
  • Future expansion to multiple centers using common data models is planned to enhance the PCDC's utility.