Real-World Data and Paper-Based Disease Registries in the Small Island Developing State of Barbados During the COVID-19 Pandemic.

Abstract

Significant data is being produced on the impact of COVID-19 on aspects of clinical care. However, less is known about the impact on real-world health data. The US Food and Drug Administration defines real-world data as "data relating to patient health status and/or the delivery of health care routinely collected from a variety of sources," including disease registries.¹ The methodology used by the Barbados National Registry (BNR)-active pursuit of first-hand clinical data using paper-based charts from multiple sources-makes it an ideal example of real-world data. Real-world data can overcome the barriers to clinical trials often present in small island developing states. This paper reviews the impact of the COVID-19 pandemic on the data of the BNR within the context of the real-world data cycle. Data collected retrospectively for 2016-2018, undergoing traceback during the pandemic, demonstrated a greater reliance on death certificate registration. A 38% reduction in the collection of new cases was noted in the postpandemic period compared to data collected in previous periods. The lack of access to source data delayed cancer registry reporting. We conclude that, given the challenges highlighted during the COVID-19 pandemic, more effort should be placed on providing timely access to real-world data for public health decision-making, particularly in small island developing states.