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Role of Multicenter Registries to Assess Outcomes of Fetal Interventions

  • Daud Lodin
  • Tara Karamlou
  • Anita J. Moon-GradyEmail author
Chapter

Abstract

Health registries are databases that are managed by an organized network of centers that contribute clinical data for research purposes. Within these registries, analysts, researchers, and physicians work together to generate new knowledge from pooled data that may improve treatments, outcomes, and systems of care. By combining cases from multiple sources, health registries create larger pools of study data without the added expense of clinical trials. They provide sample populations that have superior variability and therefore may have better representation of larger populations. Because registries utilize aggregate data, they are ideal for studying rare diseases, complications, or adverse effects. Registries also provide a unique source of collaboration for the research community, as the creation of these multicenter partnerships requires extensive participation from experts across many disciplines.

Keywords

Congenital Heart Disease Hypoplastic Left Heart Syndrome Prenatal Intervention Fetal Intervention Pediatric Health Information System 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

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Copyright information

© Springer International Publishing Switzerland 2016

Authors and Affiliations

  • Daud Lodin
    • 1
  • Tara Karamlou
    • 1
  • Anita J. Moon-Grady
    • 2
    • 3
    Email author
  1. 1.Division of Pediatric Cardiac Surgery, Department of SurgeryUniversity of CaliforniaSan FranciscoUSA
  2. 2.Fetal Cardiovascular Program and Fetal Treatment CenterUCSF Benioff Children’s Hospital, University of California San FranciscoSan FranciscoUSA
  3. 3.Division of Cardiology, Department of PediatricsUniversity of California San FranciscoSan FranciscoUSA

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