The RE-Endo Registry: A Prospective, Interoperable, Standardised Clinical Registry of Infective Endocarditis Patients

  • Shirley Belan Sousa Instituto de Cardiologia do RS - Fundação universitária de cardiologia (IC-FUC)
  • Jessica Lopes Rio Grande do Sul, Brazil
  • Alvaro Guedes Instituto de Cardiologia do RS, Porto Alegre, Rio Grande do Sul, Brazil
  • Renato Kalil Instituto de Cardiologia do RS, Porto Alegre, Rio Grande do Sul, Brazil
  • Marcelo Miglioranza Instituto de Cardiologia do RS, Porto Alegre, Rio Grande do Sul, Brazil
  • Clarissa Rodrigues Instituto de Cardiologia do RS, Porto Alegre, Rio Grande do Sul, Brazil
Keywords: infective endocarditis, clinical registry, REDCap

Abstract

Purpose: To describe the creation and implementation of the RE-Endo, a prospective, interoperable, highly scalable and standardised clinical registry of patients with infective endocarditis Methods and Results: We developed the RE-Endo through the following steps: i) data standardisation in accordance with national and international standard variables to allow for interoperability among systems; ii)  development of an initial data collection and clinical research workflow; iii) development of electronic case reports using REDCap (Research Electronic Data Capture) and in accordance with the HIPAA (Health Insurance Portability and Accountability Act) privacy rule; iv) pilot test and validation of the data collection and clinical research workflows and CRFs; v) development of automated data quality report using REDCap. Data collection occurs at the outpatient department at the moment of inclusion and every 12 months during the follow-up (phone calls and visits to the outpatients department).  Conclusions: The RE-Endo Registry represents a comprehensive database capable to represent real clinical practice favouring clinical research, technology assessment, services management and health policies.

Author Biography

Jessica Lopes, Rio Grande do Sul, Brazil

 

References

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Published
2017-04-02
How to Cite
Sousa, S., Lopes, J., Guedes, A., Kalil, R., Miglioranza, M., & Rodrigues, C. (2017). The RE-Endo Registry: A Prospective, Interoperable, Standardised Clinical Registry of Infective Endocarditis Patients. Journal of the International Society for Telemedicine and EHealth, 5, (GKR);e9:(1-4). Retrieved from https://journals.ukzn.ac.za/index.php/JISfTeH/article/view/231
Section
Global Telemedicine and eHealth Updates. Knowledge Resources. Vol. 10, 2017