New Duke registry invites hospital workers to share data on COVID-19
A nationwide registry designed to be populated with data and information from frontline healthcare workers is being launched to support fast-cycle research on the impact of COVID-19 on caregivers.
WHY IT MATTERS
The Healthcare Worker Exposure Response & Outcomes (HERO) Registry was announced on Monday. The Duke Clinical Research Institute, part of the Duke University School of Medicine, is leading the initiative, which is leveraging PCORnet, the National Patient-Centered Clinical Research Network, and is funded by the Patient-Centered Outcomes Research Institute.
The initiative is important because it seeks to crowdsource data and other information from U.S. healthcare workers, with the intent of building a knowledge base to better protect workers, as well as understand how the novel coronavirus affects people.
That's crucial, because much of the existing research on COVID-19 has been anecdotal or gathered from small research trials.
The HERO Registry seeks input from hundreds of thousands of healthcare professionals, including nurses, therapists, physicians, emergency responders, food service workers, environmental services workers, interpreters and transporters.
The registry aims to leverage the resources and capacity of PCORnet – a nationwide patient-centered clinical research network that has available capacity to conduct clinical research with real-world data.
For example, the registry's first effort aims to gather information and data from healthcare workers to facilitate rapid-cycle research on hydroxychloroquine's effectiveness in preventing coronavirus infections in healthcare workers. The drug, hyped as a treatment for COVID-19, is being used as an emergency treatment measure, but there's little existing research to support its use, either as a prophylactic or a treatment.
The registry's first study, the HERO-HCQ Trial, will invite 15,000 healthcare workers to evaluate whether hydroxychloroquine can prevent COVID-19 infections.
THE LARGER TREND
The approach to create the HERO Registry builds on other efforts to gather data quickly in order to understand the spread, scope and nature of the novel coronavirus.
For example, Apple and Google last week announced that they will work together to engage as many smartphone users to help in disease-tracking and prevention efforts. The companies have plans to launch APIs that will enable interoperability between iOS and Android products by way of official apps from public health authorities.
Similarly, LabCorp and Ciox released information on an initiative to create a registry that will contain HIPAA-compliant data sets that clinical researchers will be able to use to better understand and characterize COVID-19 diagnoses and treatments. Ciox's Real Word Data division will access and curate those clinical data sets, which will scale over the coming weeks and months to eventually aggregate millions of data points.
Additionally, Kinsa Health has been using uploaded temperature readings from a million users of its digital thermometers to map atypical fevers, which the company believes are leading indicators of potential COVID-19 outbreaks.
ON THE RECORD
The registry seeks to engage healthcare workers in a research community, understand their experiences and interests, and track critical health outcomes associated with caring for patients with COVID-19, such as stress and burnout, said Emily O'Brien, principal investigator of the HERO Registry and assistant professor in Duke's Department of Population Health Sciences.
"The HERO Registry will help speed clinical studies that address unmet needs for healthcare workers," O'Brien added.
"Hospitals, health systems and health plans that participate in PCORnet have worked in partnership for years, and are well poised to deliver fast, reliable research infrastructure to study COVID-19," said Chris Forrest, MD, co-chair of the HERO Registry and principal investigator of PEDSnet, one of multiple PCORnet Partner Networks. "Infrastructure issues that might cause lag time for other studies are hurdles PCORnet has already crossed. PCORnet was developed for exactly this type of research challenge, and the network is ready to meet the moment."