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Updated: Jun 30, 2025
Establishment of a Clinic-based Biorepository
Published on: May 29, 2017
Developing Crowdsourced Clinical Registry Studies
Carolynn Thomas Jones1, Jeremy Walker, Rachel L McMullen
1Carolynn Thomas Jones is clinical professor and director of the Master of Clinical Research Program at The Ohio State University College of Nursing in Columbus. Jeremy Walker is an assistant professor at the University of Alabama Birmingham School of Medicine, where Rachel L. McMullen is a clinical trials specialist and Peter G. Pappas is a professor of medicine. Contact author: Carolynn Thomas Jones, jones.5342@osu.edu . Article development was supported by National Center for Advancing Translational Sciences Grants No. UL1TR002733 and No. UM1TR004548. The authors wish to acknowledge Jeremy Gold, MD, MS, medical epidemiologist at the Centers for Disease Control and Prevention (CDC), for his guidance regarding study methodology. The authors were funded in part by CDC Cooperative Agreement No. CDC-RFA-CK20-2003. The findings of this report are those of the authors and do not necessarily represent the official position of the CDC.
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.
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