A. H. Healy1, K. A. Frappier1, J. L. Madden1, A. Elmer1, S. H. McKellar1, C. H. Selzman1 1University Of Utah,Salt Lake City, UT, USA
Introduction: Many institutions submit patient data to national registries while simultaneously maintaining their own institutional databases, creating substantial duplication of effort. Research Electronic Data Capture (REDCap) is a free technology available to academic centers in the United States to help in the storage and management of research data sets. REDCap can be customized to facilitate importation of data from various sources. We report the use of REDCap to create a comprehensive institutional data set created from submissions to a national registry.
Methods: Institutional data for patients with left ventricular assist devices (LVADs) was regularly submitted to the Interagency Registry for Mechanically Assisted Circulatory Support (INTERMACS) beginning in 2006. Using INTERMACS entry forms as a template, corresponding REDCap forms were created. Care was taken to match REDCap variable names to those used in INTERMACs. An institutional request for INTERMACs data was then made. This data was then uploaded to REDCap, populating the previously created forms with retrospective data.
Results: The data upload from INTERMACS to REDCap was successful in 90 LVAD patients comprising data from an eight-year period, creating a data set that was identical to the data in the national database without duplication of effort. With the REDCap forms created and populated, it was also confirmed that this information could be regularly updated through serial data requests. This data could then be combined with other patient-based REDCap forms that store data not collected by INTERMACS, such as the results of tissue-based biologic studies performed at an institutional level. REDCap data exports, which can be easily deidentified to maintain patient confidentiality, can be customized depending on the topic of interest.
Conclusion: REDCap is a user-friendly research data management tool that can be used to store data submitted to national registries through data importation to forms identical to those used in the national registry. Periodic updates to the REDCap database can be easily made by requesting institutional data from the national registry, eliminating duplication of effort in maintaining institutional databases and data transcription errors, such as keystroke errors. Though this method is vulnerable to changes in forms at the national registry level, it makes large sets of institutional data quickly available to facilitate institutional research projects.