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Virginians can help scientists understand how the pandemic affects their lives, livelihoods

Your friends and families have asked, and now researchers want to know: How have you been during the coronavirus pandemic?

Have you been ill or anxious? Have you lost your job, had a hard time paying bills or buying food? Or has life been more or less the same, but different?

While you might feel you’ve been talking about nothing but the coronavirus since March, Virginia’s researchers haven’t had a unified way to tap into that information until now. A COVID-19 registry is being developed so that scientists can find answers to their questions from Virginians.

The Virginia Department of Health provides a wealth of daily data, where researchers can go to find out basic information about the 80,393 cases of COVID-19 that have been reported as of Wednesday, and that have caused 7,351 hospitalizations and 2,051 deaths.

But they can’t easily know how the disease has affected people’s lives and livelihoods, and what the differences are across communities. The COVID-19 database seeks to provide some of the answers.

The Integrated Translational Health Institute of Virginia, known by its simpler name of iTHRIV, has partnered with the Health Department to collect information from people and make it available to qualified researchers.

Any Virginian who wants can contribute to the COVID-19 database. That information will then be shared over secured systems with researchers whose projects have been approved to use the data.

“We just have a tiny sliver of information as to what is happening in our state. So we are trying to supplement that with a standard set of questions,” said Johanna Loomba, who is leading the iTHRIV research team at the University of Virginia.

“We had scientists with the Department of Health and our partner institutions come up with those questions to say here are the things we have been trying to gather information on,” she said. “Sometimes you see one-off surveys go out and ask people about social distancing or the impact of jobs or other such things. Rather than it be small, small efforts that are only used by one team of researchers, our goal is to create a broad bank of data that can be reused by many people and also can be updated over time.”

ITHRIV is a partnership formed by UVa, Virginia Tech, Carilion Clinic and Inova Health System and funded by a $23 million award last year from the National Institutes of Health. The goal is to collaborate, rather than compete, on projects to advance the pace of medical discoveries from labs to clinics.

“There are many ideas that people have in terms of looking at social inequity issues in the state,” Loomba said.

ITHRIV will begin soon reviewing researchers’ proposals.

“All of these projects will be published on our website so the public will be able to watch and see who is using the data over time,” she said.

To participate, go to the website and answer the survey questions, which gather demographic information and then ask about whether you have been tested, infected or hospitalized with the disease. It also asks if you comply with social distancing and whether there are changes in your physical, mental or emotional health; if you are a health care worker; have lost income; have difficulty paying bills or accessing the internet.

Loomba said that participants can go in later and change any of the information should their circumstances change.

The Health Department will be leading the marketing campaign to ask people to participate. The survey is open to all Virginians, and there is no limit as to how many can participate.

“The more people who contribute their data, the better. We’d like to have all communities represented,” she said.


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