The Patient Centered Outcomes Research Institute (PCORI) has established a new registry inviting all U.S. health workers to share their clinical and life experiences during the COVID-19 pandemic to further an understanding of the problems facing front-line workers and facilitate research to address their unmet needs.
The Health Care Worker Exposure Response & Outcomes (HERO) Registry was launched in April to “engage health care workers in a research community, understand their experiences and interests and track health outcomes associated with caring for patients with COVID-19,” according to the registry’s website, heroesresearch.org.
Coordinated by the Duke Clinical Research Institute of the Duke University School of Medicine, the HERO Registry is asking anyone 18 or older who works in a setting where people receive health care to participate. This includes physicians, nurses, therapists, emergency responders, food service workers, environmental services workers, interpreters and transporters. It is free to join.
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The HERO Registry comes as physicians and other health workers are plagued by shortages of personal protective equipment (PPE), with many worrying that they could acquire COVID-19 and wondering how to keep their family members from the coronavirus.
Research from the Centers for Disease Control and Prevention published in the Morbidity and Mortality Weekly Report found that, as of April 9, nearly 9,300 U.S. health professionals had been infected by the coronavirus and 27 of them had died of COVID-19.
"We're calling on all health care workers to share their perspectives so that we can understand and provide answers to the problems they face in real time—and over time," said Emily O'Brien, PhD, principal investigator of the HERO Registry and assistant professor in population health sciences at Duke University School of Medicine.
Learn about the AMA’s work to increase the supply of PPE.
One of the HERO Registry’s cornerstone projects is the HERO-HCQ Trial, an upcoming eight-week randomized clinical trial of approximately 15,000 registry participants that will evaluate whether hydroxychloroquine is better than placebo in preventing COVID-19 infection.
Also funded by PCORI, the study will be conducted through approximately 40 U.S. clinical research sites in PCORnet, the National Patient-Centered Clinical Research Network.
"Infrastructure issues that might cause lag time for other studies are hurdles PCORnet has already crossed,” said Chris Forrest, MD, PhD, co-chair of the HERO Registry and principal investigator of PEDSnet, one of multiple PCORnet Partner Networks participating in the study. “PCORnet was developed for exactly this type of research challenge, and the network is ready to meet the moment.”
The registry aims to create a community that will be “at the ready to facilitate rapid-cycle research,” the website notes. Aside from being kept apprised of opportunities to participate in studies, registry participants will receive surveys and research findings. Stress and burnout are among the health outcomes the project will track.
“Health care workers who are on the front lines have the opportunity to help everyone understand the impact of the COVID-19 crisis on them and their colleagues, families and friends," said Adrian Hernandez, MD, MHS, principal investigator of the HERO research program and vice dean for clinical research at the Duke University School of Medicine. "Signing up for this registry is yet another contribution they make.”
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