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Developing Crowdsourced Clinical Registry Studies.
Am J Nurs
April 2024
Carolynn 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, . 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.
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.
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