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Patient Registries*

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Clinical Research Informatics

Part of the book series: Health Informatics ((HI))

Abstract

Patient registries are fundamental to the research process. Registries provide consistent data for defined populations and can support the study of the distribution and determinants of various diseases. One advantage of registries is the ability to observe caseload and population characteristics over time, which might facilitate the evaluation of disease incidence, disease etiology, planning, operation and evaluation of services, evaluation of treatment patterns, and diagnostic classification. Registries can be developed for many different needs, including research recruitment, study planning, public health, and observational research. Any registry program must collect high-quality data to be useful for its stated purpose. We describe the methodological issues, limitations, and ideal features of registries to support various purposes. The future impact of registries on our understanding and interventions for many diseases will depend upon technological and political solutions for global collaborations to achieve consistent data (via standards) and regulations for various registry applications. The development, implementation, interpretation, and evaluation of registries are areas that can benefit from informatics expertise and coordination.

*Adapted from Richesson RL, Vehik K. Patient Registries: Utility, Validity and Inference. In: Posada M and Groft SC (ed). Rare Diseases Epidemiology, The Netherlands, Springer, 2010, with kind permission of Springer Science + Business Media.

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Author information

Authors and Affiliations

  1. Division of Informatics, Duke University School of Nursing, 311 Trent Drive, Durham, NC, 27710, USA

    Rachel L. Richesson Ph.D., MPH

  2. Department of Pediatrics, Pediatrics Epidemiology Center, University of South Florida, 3650 Spectrum Boulevard, Suite 100, Tampa, FL, 33612, USA

    Kendra Vehik Ph.D., MPH

Authors
  1. Rachel L. Richesson Ph.D., MPH
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  2. Kendra Vehik Ph.D., MPH
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Correspondence to Rachel L. Richesson Ph.D., MPH .

Editor information

Editors and Affiliations

  1. College of Medicine, University of South Florida, Bruce B. Downs Blvd. 12901, Tampa, 33612-4799, Florida, USA

    Rachel L. Richesson

  2. College of Medicine, University of South Florida, Bruce B. Downs Blvd. 12901, Tampa, 33612-4799, Florida, USA

    James E. Andrews

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© 2012 Springer-Verlag London Limited

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Richesson, R.L., Vehik, K. (2012). Patient Registries* . In: Richesson, R., Andrews, J. (eds) Clinical Research Informatics. Health Informatics. Springer, London. https://doi.org/10.1007/978-1-84882-448-5_13

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  • DOI: https://doi.org/10.1007/978-1-84882-448-5_13

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