Development of the Canadian COVID-19 Emergency Department Rapid Response Network population-based registry: a methodology study

Abstract

Background: Emergency physicians lack high-quality evidence for many diagnostic and treatment decisions made for patients with suspected or confirmed coronavirus disease 2019 (COVID-19). Our objective is to describe the methods used to collect and ensure the data quality of a multicentre registry of patients presenting to the emergency department with suspected or confirmed COVID-19.

Methods: This methodology study describes a population-based registry that has been enrolling consecutive patients presenting to the emergency department with suspected or confirmed COVID-19 since Mar. 1, 2020. Most data are collected from retrospective chart review. Phone follow-up with patients at 30 days captures the World Health Organization clinical improvement scale and contextual, social and cultural variables. Phone follow-up also captures patient-reported quality of life using the Veterans Rand 12-Item Health Survey at 30 days, 60 days, 6 months and 12 months. Fifty participating emergency departments from 8 provinces in Canada currently enrol patients into the registry.

Interpretation: Data from the registry of the Canadian COVID-19 Emergency Department Rapid Response Network will be used to derive and validate clinical decision rules to inform clinical decision-making, describe the natural history of the disease, evaluate COVID-19 diagnostic tests and establish the real-world effectiveness of treatments and vaccines, including in populations that are excluded or underrepresented in clinical trials. This registry has the potential to generate scientific evidence to inform our pandemic response, and to serve as a model for the rapid implementation of population-based data collection protocols for future public health emergencies.

Trial registration: Clinicaltrials.gov, no. NCT04702945.

Figure 1:

Participating sites of the Canadian COVID-19 Emergency Department Rapid Response Network registry. This figure contains information licensed under the Open Government Licence – Canada (https://open.canada.ca/en/open-government-licence-canada).

Figure 2:

Data flow diagram for registry data. Note: CIHI = Canadian Institute for Health Information, COVID-19 = coronavirus disease 2019, DAD = Discharge Abstract Database, ED = emergency department, HCN = health care number, ID = identification number, NACRS = National Ambulatory Care Reporting System, UBC = University of British Columbia. *The Protocol Review and Publication Committee reviews the Registry Study manuscript proposal and recommends to the Registry Executive Committee (REC) that it is in scope. The Data Access and Management Committee reviews and recommends to the REC that all the necessary agreements and approvals are in place to access the data. The REC then approves all manuscripts and data access, including linkage, when it is required.

Figure 3:

Governance of the Canadian COVID-19 Emergency Department Rapid Response Network. Note: CIHR = Canadian Institutes of Health Research, DAMC = Data Access and Management Committee, EC = Executive Committee, HDRN = Health Data Research Network, iKT = integrated knowledge translation, KT = knowledge translation, nPI = nominated principal investigator, PE = patient engagement, PDF = postdoctoral fellow, PRPC = Protocol Review and Publication Committee, SAC = Scientific Advisory Committee, UBC = University of British Columbia, VCHRI = Vancouver Coastal Health Research Institute.