Photo by Gustavo Fring

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For some of us, the worst aspect of the coronavirus pandemic is the fear of the unknown. How long will it last? When will a vaccine be available? Will we contract the virus, and if so, how bad will it be? 

Since late March, a digital study called Behavioral, Environmental and Treatments for COVID-19 (Beat19) has been gathering real-world information about the novel virus’ symptoms and effects. 

Project researchers hope to recruit 100,000 people to the volunteer registry to compile a full list of symptoms and track the course of the disease. 

“Until people see someone close to them has this experience, it’s kind of a mystery — and that’s what we’re trying to dispel,” said Mark Shapiro, vice president of clinical development at xCures and the study’s principal investigator.

About 80% of people with COVID-19 will experience “mild to moderate” symptoms, according to the Centers for Disease Control, while about 20% will need hospitalization. 

“The vast majority of people who get this illness will experience it at home,” Shapiro said. “We wanted to know what that was like.”

A daily e-diary

Registering for the Beat19 study is relatively easy. Go to the website, beat19.org, and electronically sign a consent form. You don’t have to be sick or think you have COVID-19 to participate.

You’ll be asked to provide some basic demographic information, including your age, gender and Zip code, along with a brief medical history. (Study organizers “anonymize” the data to protect privacy.)

Every day, you will receive a text or an email asking about your health. If you’re feeling fine, you’ll answer only three questions. If you’re ill, however, you’ll be asked several more questions about your symptoms.

Since the longitudinal, observational study launched in late March, people of all ages from all 50 states have enrolled.

So far, the Federal Drug Administration (FDA) has accessed the data twice. Several pharmaceutical and biotech companies seeking a vaccine also have downloaded the survey data, according to Shapiro. 

To date, the results show that infected people don’t always have a high fever.

“The [known] symptoms being used to describe COVID-19 have changed in the three or four months we’ve been doing this,” Shapiro said. “For example, we do see fever, but it’s not a striking symptom.”

That’s an important finding, Shapiro said, because some people without a high fever were denied a test. People may spread the virus if they don’t know they have it.

‘A long recovery’

Although the people-powered registry doesn’t provide monetary compensation for participants, they will be given access to a dashboard of the combined data of all volunteers.

Many volunteers simply want to share their stories, Shapiro said. “This is a very, very rough disease, and the people who have had it really want to get that message out,” said Shapiro, who said he receives 20 to 30 emails every day from survivors.

Many survivors report the same lingering effects of the coronavirus.

“I talk to people who are super fit in their 30s, people who are triathletes, and they were completely bedridden and didn’t start to feel better for about three weeks. 

“That’s a story that’s come up a lot in our data…It’s not normal to be sick or experience fatigue for a month or two,” Shapiro said. “It’s a long recovery.” 

To sign up, visit beat19.org.