Implementation of regional COVID-19 registry in Hormozgan (RCovidRH), Iran: Rationale and study protocol

Abstract

Background:The rapid outbreak of COVID-19 has resulted in a global pandemic in 2020. Information sources such as disease registries through accessing quality, valid, accurate, and timely data empower researchers and health authorities to study and develop appropriate actions. Our study describes the protocol for implementation of regional COVID-19 registry in Hormozgan province (RCovidRH).Methods: We followed approved phases for the development of RCovidRH to cover the population in Hormozgan. Missioned to develop and implement the protocol, the registry's steering committee was made up of 10 members from subject fields of the registry at the core and 5 subgroups. The main purpose of the registry is to provide a comprehensive information profile of demographic, clinical, laboratory, imaging, and treatment data of confirmed and probable COVID-19 patients in Hormozgan. The data is retrospectively and prospectively collected. Case report form (CRF) was mainly based on International Severe Acute Respiratory and Emerging Infection Consortium (ISARIC) CRF. A web-based, 2-language software was also developed to facilitate data collection and storage. Data analysis is to be conducted with collaboration of clinical physicians, data-mining specialists, and epidemiologists after reaching appropriate sample size.Results: We included data related to demographic and identification, onset and admission, signs and symptoms at hospital admission, admission signs and symptoms, comorbidities, pathogen testing, assessment, laboratory, imaging, complications, treatment and medication, and outcomes. We found this registry was limited by incomplete clinical data for small fraction of outpatients, incomplete or inaccurate address by referred people due to fear of social rejection, delay in data entry at the facilities due to workload. Conclusion:This registry via organizing clinical and epidemiological COVID-19 data increases the potentiality of joint studies. Recognition and coordination of a registry is highly important to solve its limitations to collect data. Other universities and provinces can apply our model to develop COVID-19 registries or data sets for this disease.

Designing a comprehensive minimum dataset for patients with COVID-19 in Iranian hospital information systems

“…For instance, a web-based registry specifically designed for COVID-19 aimed to provide a reliable data source for reporting and benchmarking the disease (Kazemi-Arpanahi et al, 2020). The implementation protocol of the regional COVID-19 registry in Hormozgan province emphasised the potential for collaborative studies and data coordination, enabling comprehensive insights into COVID-19 data (Khorrami et al, 2020), and a real-time EHR-based COVID-19 surveillance system demonstrated its effectiveness in monitoring and managing the pandemic (Sheikhtaheri et al, 2022). Our study's customised MDS approach enhances the accuracy and relevance of COVID-19 data in Iran, supporting evidence-based strategies for pandemic control.…”

“…Various studies have highlighted the importance of registries and EHRs in managing COVID-19 data (Kazemi-Arpanahi et al, 2020; Khorrami et al, 2020; Sheikhtaheri et al, 2022; Zarei et al, 2021). For instance, a web-based registry specifically designed for COVID-19 aimed to provide a reliable data source for reporting and benchmarking the disease (Kazemi-Arpanahi et al, 2020).…”

Designing a Multicenter Registry of COVID-19 and Other Respiratory Infections in Fars, Iran

“…Therefore, a comprehensive database will be helpful to support researchers and clinicians for a better understanding of the disease and proper treatments. 12 As of March 1, 2021, COVID-19 has affected 217 countries and territories with more than 114 million confirmed cases around the world. In Iran, there have been more than 1.6 million total cases and over 60 000 deaths.…”