George Alleyne Chronic Disease Research Centre, Caribbean Institute for Health Research, The University of the West Indies, Bridgetown, Barbados.
J Registry Manag. 2023 Spring;50(1):40-42.
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 as "data relating to patient health status and/or the delivery of health care routinely collected from a variety of sources," including disease registries. 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.
大量数据正在生成，以了解 COVID-19 对临床护理各个方面的影响。然而，对于其对真实世界健康数据的影响，人们知之甚少。美国食品和药物管理局将“与患者健康状况和/或医疗保健提供有关的数据”定义为“常规从各种来源收集的数据”，包括疾病登记处。巴巴多斯国家登记处（BNR）使用的方法——积极从多个来源的纸质图表中获取第一手临床数据——使其成为真实世界数据的理想示例。真实世界的数据可以克服临床试验在小岛屿发展中国家经常面临的障碍。本文在真实世界数据周期的背景下，回顾了 COVID-19 大流行对 BNR 数据的影响。对 2016-2018 年期间的回顾性数据进行追溯，在大流行期间更多地依赖死亡证明登记。与前几个时期收集的数据相比，大流行后时期新病例的采集量减少了 38%。由于无法访问原始数据，癌症登记报告也被推迟。我们的结论是，鉴于 COVID-19 大流行期间突出的挑战，应更加努力为公共卫生决策提供及时访问真实世界数据的机会，特别是在小岛屿发展中国家。
