Developing Crowdsourced Clinical Registry Studies

Am J Nurs. 2024 Apr 1;124(4):36-41. doi: 10.1097/01.NAJ.0001010572.96486.87. Epub 2024 Mar 21.

Abstract

Crowdsourced registries have been used to quickly gather information, especially during emerging public health concerns. Registries that began during the COVID-19 pandemic were used to rapidly answer key questions on coinfections, experimental treatments, and morbidity and mortality outcomes. Registries are also used more frequently to support clinical trials and track long-term outcomes in patient populations. This article reviews registry methodology, including the collection of data from crowdsourcing and real-world sources, that can be applied to nurse researcher and clinical research nurse skill sets. The authors illustrate a recently reported crowdsourced COVID-19 and cryptococcal disease registry that followed project management strategies and the Agency for Healthcare Research and Quality registry guidelines for planning, execution, and analysis of registries and other research methods.

Publication types

  • Review

MeSH terms

  • COVID-19*
  • Crowdsourcing* / methods
  • Humans
  • Pandemics
  • Public Health
  • Registries