Databases for Pediatric and Congenital Cardiac Care

Jeffrey P. Jacobs, MD, Marshall L. Jacobs, MD, John E. Mayer Jr, MD, S. Ram Kumar, MD, PhD, Constantine Mavroudis, MD

Key Points

  • This chapter reviews progress that has been made and summarizes the state of the art in eight domains of outcomes analysis and quality improvement.
    1. Nomenclature
    2. Database
    3. Risk adjustment
    4. Verification of the completeness and accuracy of the data
    5. Collaboration across medical and surgical subspecialties
    6. Linking of databases and registries
    7. Longitudinal follow-up
    8. Assessment and improvement of quality
  • Databases for pediatric and congenital cardiac care require upfront investment and standardization but in turn, tremendously impact our ability to improve cardiac surgical outcomes over time at the institutional level and at the national and international levels.
  • Risk stratification, risk modeling, and data verification are essential components of meaningful outcomes analysis.
  • Opportunities for further advancing comparative effectiveness research in pediatric and congenital cardiac care include collaboration between subspecialties, societies, and databases; database linkage; and longitudinal follow-up.

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