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Clinical Research Informatics pp 269–289Cite as

Patient Registries for Clinical Research

Part of the Health Informatics book series (HI)

Abstract

Patient registries are fundamental to biomedical research. Registries provide consistent data for defined populations and can be used to support the study of the determinants and manifestations of disease and provide a picture of the natural history, outcomes of treatment, and experiences of individuals with a given condition or exposure. It is anticipated that electronic health record (EHR) systems will evolve to ubiquitously capture detailed clinical data that supports observational, and ultimately interventional, research. Emerging data representation and exchange standards can enable the interoperability required for automated transmission of clinical data into patient registries. This chapter describes informatics principles and approaches relevant to the design and implementation of patient registries, with emphasis on the ingestion of clinical data and the role of patient registries in research and learning health activities.

Keywords

  • Registries
  • Clinical research
  • Secondary data use
  • Observational research methods
  • Data standards
  • Interoperability
  • Outcomes measurement
  • Learning health systems

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Author information

Authors and Affiliations

  1. Duke University School of Nursing, Durham, NC, USA

    Rachel L. Richesson PhD, MPH, FACMI

  2. Prometheus Research, LLC, New Haven, CT, USA

    Leon Rozenblit JD, PhD

  3. University of South Florida, Health Informatics Institute, Tampa, FL, USA

    Kendra Vehik PhD, MPH

  4. Duke University School of Medicine, Durham, NC, USA

    James E. Tcheng MD

Authors
  1. Rachel L. Richesson PhD, MPH, FACMI
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  2. Leon Rozenblit JD, PhD
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  3. Kendra Vehik PhD, MPH
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  4. James E. Tcheng MD
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Corresponding author

Correspondence to Rachel L. Richesson PhD, MPH, FACMI .

Editor information

Editors and Affiliations

  1. Duke University School of Nursing, Durham, NC, USA

    Dr. Rachel L. Richesson

  2. School of Information, University of South Florida, Tampa, FL, USA

    James E. Andrews

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Richesson, R.L., Rozenblit, L., Vehik, K., Tcheng, J.E. (2019). Patient Registries for Clinical Research. In: Richesson, R., Andrews, J. (eds) Clinical Research Informatics. Health Informatics. Springer, Cham. https://doi.org/10.1007/978-3-319-98779-8_13

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  • DOI: https://doi.org/10.1007/978-3-319-98779-8_13

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  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-319-98778-1

  • Online ISBN: 978-3-319-98779-8

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