A study to design minimum data set of COVID-19 registry system

Abstract

Abstract Background From the beginning of the COVID-19 pandemic, the development of infrastructures to record, collect and report COVID-19‏ ‏data has become a fundamental necessity in the world. The disease registry system can help build an infrastructure to collect data systematically. The study aimed to design a minimum data set for the COVID-19 registry system. Methods A qualitative study to design an MDS for the COVID-19 registry system was performed in five phases at Ahvaz University of Medical Sciences in Khuzestan Province in southwestern Iran, 2020–2021. In the first phase, assessing the information requirements was performed for the COVID-19 registry system. Data elements were identified in the second phase. In the third phase, the MDS was selected, and in the four phases, the COVID-19 registry system was implemented as a pilot study to test the MDS. Finally, based on the experiences gained from the COVID-19 registry system implementation, the MDS were evaluated, and corrections were made. Results MDS of the COVID-19 registry system contains eight top groups including administrative (34 data elements), disease exposure (61 data elements), medical history and physical examination (138 data elements), findings of clinical diagnostic tests (101 data elements), disease progress and outcome of treatment (55 data elements), medical diagnosis and cause of death (12 data elements), follow-up (14 data elements), and COVID-19 vaccination (19 data elements) data, respectively. Conclusion Creating a standard and comprehensive MDS can help to design any national data dictionary for COVID-19 and improve the quality of COVID-19 data.