Division of Rheumatology, University of Washington, Seattle, WA.
Rheumatologist, Crystal Run Health, Middletown, NY, USA.
Rheumatology (Oxford). 2021 Jan 5;60(1):353-358. doi: 10.1093/rheumatology/keaa483.
As the coronavirus disease 2019 pandemic developed there was a paucity of data relevant to people living with rheumatic disease. This led to the development of a global, online registry to meet these information needs. This manuscript provides a detailed description of the coronavirus disease 2019 Global Rheumatology Alliance registry development, governance structure, and data collection, and insights into new ways of rapidly establishing global research collaborations to meet urgent research needs.
We use previously published recommendations for best practices for registry implementation and describe the development of the Global Rheumatology Alliance registry in terms of these steps. We identify how and why these steps were adapted or modified. In Phase 1 of registry development, the purpose of the registry and key stakeholders were identified on online platforms, Twitter and Slack. Phase 2 consisted of protocol and data collection form development, team building and the implementation of governance and policies.
All key steps of the registry development best practices framework were met, though with the need for adaptation in some areas. Outputs of the registry, two months after initial conception, are also described.
The Global Rheumatology Alliance registry will provide highly useful, timely data to inform clinical care and identify further research priorities for people with rheumatic disease with coronavirus disease 2019. The formation of an international team, easily able to function in online environments and resulting in rapid deployment of a registry is a model that can be adapted for other disease states and future global collaborations.
随着 2019 年冠状病毒病（COVID-19）大流行的发展，针对风湿病患者的相关数据非常匮乏。这导致了一个全球性的在线注册系统的开发，以满足这些信息需求。本文详细介绍了 2019 年冠状病毒病全球风湿病联盟（Global Rheumatology Alliance，GRA）注册系统的开发、治理结构和数据收集，并深入了解了迅速建立全球研究合作关系以满足紧迫研究需求的新方法。
我们使用先前发表的关于注册实施最佳实践的建议，并根据这些步骤描述 GRA 注册系统的开发。我们确定了这些步骤是如何以及为何进行了调整或修改。在注册开发的第一阶段，通过在线平台、Twitter 和 Slack 确定了注册的目的和主要利益相关者。第二阶段包括协议和数据收集表的开发、团队组建以及治理和政策的实施。
满足了注册开发最佳实践框架的所有关键步骤，但在某些方面需要进行调整。还描述了注册系统在初步构想两个月后的产出。
GRA 注册系统将为患有 COVID-19 的风湿病患者提供非常有用和及时的数据，以指导临床护理并确定进一步的研究重点。国际团队的组建，能够轻松地在在线环境中运作，并迅速部署注册系统，这是一种可以应用于其他疾病状态和未来全球合作的模式。
