The COVID-19 Global Rheumatology Alliance: evaluating the rapid design and implementation of an international registry against best practice.

ABSTRACT:

Objectives

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.

Methods

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

SUBMITTER: Liew JW 

PROVIDER: S-EPMC7454885 | biostudies-literature | 2021 Jan

REPOSITORIES: biostudies-literature