The Pediatric COVID-19 Registry in Kuwait: Methodology and Results of Pilot Phase

Sarah Qabazard 1, Dalia Al-Abdulrazzaq 2, Hessa Al-Kandari 1 3, Mariam Ayed 3, Ayed Alanezi 4, Nufoud Al-Shammari 5, Zaid Alharbash 6, Muna Al-Khabbaz 7, Khaled Kalander 8, Saadoun Bin-Hassan 1 3, Abdulla Alfraij 3, Mohammad Alghounaim 6, Khaled Alsaeid 2, Hashem Al-Hashemi 3

Affiliations

01 January 2022

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doi: 10.1159/000524756

Abstract

Objective: Establishing a pediatric COVID-19 registry in Kuwait (PCR-Q8) was deemed imperative during the pandemic to study children infected with severe acute respiratory syndrome-related coronavirus 2 (SARS-CoV-2) focusing on mode of presentation, therapeutic interventions, disease severity, and early outcomes. This manuscript describes the rapid establishment of the PCR-Q8 registry showcasing an infrastructure of the development process and presents the results of the pilot phase.

Subject and methods: The registry was developed and implemented using the general key steps from a resource titled "Registries for Evaluating Patient Outcomes: A User's Guide" as a guide for best practice, experience from a previously established pediatric diabetes registry in Kuwait and several other COVID-19 registries developed globally. During the pilot phase, a convenience sample of 120 children was included, of whom 66 (55%) were male.

Results: Experience and expertise from other COVID-19 registries; guidance provided by the World Health Organization; and effective collaboration and cooperation between the stakeholders, study group, and data enterers during these challenging times were critical for the development and implementation of the registry. Our results were similar to international reports which showed that most children presented with mild disease (69.2%), majority (70.2%) had normal chest X-ray, and the most common symptom at presentation was fever (77%).

Conclusion: We anticipate the development of PCR-Q8 to be a stepping-stone for more in-depth investigation of SARS-CoV-2 infection in children in Kuwait and for the establishment of other registries.

Keywords: Pediatric registry; Severe acute respiratory syndrome-related coronavirus 2.

Conflict of interest statement

The authors have no conflicts of interest to declare.

Figures

Fig. 1 PCR-Q8 registry group structure. The PCR-Q8 registry group was responsible for governance and oversight of the registry, drafting the grant proposal, obtaining ethical approval, establishing collaborations, and supervising data collection and reporting to MOH. The executive team (ET) was responsible for overseeing the activities of the scholar, data management (DMT), and field teams (FT). ET facilitated the study implementation, identifying obstacles and finding solutions, delegated tasks, and communicated with the other teams. The scholar team's (ST) role was to compile and review emerging evidence on COVID-19 worldwide and to update research directions, map and plan potential research outputs accordingly. The DMT was responsible for monitoring data entry, generating weekly reports (data collection rate, cleaning, verifying), and reporting data collection and management recommendations to the ET. FT leaders were responsible for training site leader and field team members data collection and entry, monitoring data collection, coordinating with site leaders, and implementing any recommendations made by the ET. Site leaders were the leaders of their data source site and thus also the leaders of the FT members (i.e., residents/data collectors) of that site. They were responsible for ensuring data was collected, arranging weekly meetings to ensure accuracy and reliability of data, and communicating with other site leaders

Fig. 1 PCR-Q8 registry group structure. The PCR-Q8 registry group was responsible for governance and oversight of the registry, drafting the grant proposal, obtaining ethical approval, establishing collaborations, and supervising data collection and reporting to MOH. The executive team (ET) was responsible for overseeing the activities of the scholar, data management (DMT), and field teams (FT). ET facilitated the study implementation, identifying obstacles and finding solutions, delegated tasks, and communicated with the other teams. The scholar team's (ST) role was to compile and review emerging evidence on COVID-19 worldwide and to update research directions, map and plan potential research outputs accordingly. The DMT was responsible for monitoring data entry, generating weekly reports (data collection rate, cleaning, verifying), and reporting data collection and management recommendations to the ET. FT leaders were responsible for training site leader and field team members data collection and entry, monitoring data collection, coordinating with site leaders, and implementing any recommendations made by the ET. Site leaders were the leaders of their data source site and thus also the leaders of the FT members (i.e., residents/data collectors) of that site. They were responsible for ensuring data was collected, arranging weekly meetings to ensure accuracy and reliability of data, and communicating with other site leaders

Fig. 2 Timeline of key steps in registry planning PCR-Q8 using the framework of Gliklich et al. (17).

Fig. 2 Timeline of key steps in registry planning PCR-Q8 using the framework of Gliklich et al. (17).

Fig. 3 Data source mapping.

Fig. 3 Data source mapping.

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