title: A comprehensive stroke center patient registry: advantages, limitations, and lessons learned.
abstract: BACKGROUND
  The use of a medical data registry allows institutions to effectively manage information for many different investigations related to the registry, as well as evaluate patient's trends over time, with the ultimate goal of recognizing trends that may improve outcomes in a particular patient population.
  
  
  METHODS
  The purpose of this article is to illustrate our experience with a stroke patient registry at a comprehensive stroke center and highlight advantages, disadvantages, and lessons learned in the process of designing, implementing, and maintaining a stroke registry. We detail the process of stroke registry methodology, common data element (CDE) definitions, the generation of manuscripts from a registry, and the limitations.
  
  
  CONCLUSIONS
  The largest advantage of a registry is the ability to prospectively add patients, while allowing investigators to go back and collect information retrospectively if needed. The continuous addition of new patients increases the sample size of studies from year to year, and it also allows reflection on clinical practices from previous years and the ability to investigate trends in patient management over time.
  
  
  CONCLUSIONS
  The greatest limitation in this registry pertains to our single-entry technique where multiple sites of data entry and transfer may generate errors within the registry.
  
  
  CONCLUSIONS
  To reduce the potential for errors and maximize the accuracy and efficiency of the registry, we invest significant time in training competent registry users and project leaders. With effective training and transition of leadership positions, which are continuous and evolving processes, we have attempted to optimize our clinical research registry for knowledge gain and quality improvement at our center.
authors.affiliation: Tulane University School of Medicine, New Orleans, LA, USA.
authors.forename: James E
authors.initials: JE
authors.lastname: Siegler
authors.affiliation: Department of Epidemiology, School of Public Health, University of Alabama at Birmingham, Birmingham, AL, USA; Department of Neurology, School of Medicine, University of Alabama at Birmingham, Birmingham, AL, USA.
authors.forename: Amelia K
authors.initials: AK
authors.lastname: Boehme
authors.affiliation: Tulane University School of Medicine, New Orleans, LA, USA.
authors.forename: Adrianne M
authors.initials: AM
authors.lastname: Dorsey
authors.affiliation: Tulane University School of Medicine, New Orleans, LA, USA.
authors.forename: Dominique J
authors.initials: DJ
authors.lastname: Monlezun
authors.affiliation: Tulane University School of Medicine, New Orleans, LA, USA.
authors.forename: Alex J
authors.initials: AJ
authors.lastname: George
authors.affiliation: Stroke Program, Department of Neurology, Tulane University Hospital, New Orleans, LA, USA.
authors.forename: Amir
authors.initials: A
authors.lastname: Shaban
authors.affiliation: Advanced Biomedical Informatics Group, LLC, Iowa City, IA, USA; Department of Psychiatry, University of Iowa, Iowa City, IA, USA.
authors.forename: H Jeremy
authors.initials: HJ
authors.lastname: Bockholt
authors.affiliation: Department of Epidemiology, School of Public Health, University of Alabama at Birmingham, Birmingham, AL, USA; Department of Neurology, School of Medicine, University of Alabama at Birmingham, Birmingham, AL, USA; Health Services and Outcomes Research Center for Outcome and Effectiveness Research and Education (COERE), University of Alabama at Birmingham, Birmingham, AL, USA; Center of Excellence in Comparative Effectiveness Research for Eliminating Disparities (CERED), Minority Health & Health Disparities Research Center (MHRC), University of Alabama at Birmingham, Birmingham, AL, USA.
authors.forename: Karen C
authors.initials: KC
authors.lastname: Albright
authors.affiliation: Stroke Program, Department of Neurology, Tulane University Hospital, New Orleans, LA, USA.
authors.forename: Sheryl
authors.initials: S
authors.lastname: Martin-Schild
keywords: common data elements; epidemiological methods; methodology; registries; source data verification; stroke