Researchers said this week they are seeking participants for a study examining the long-term impact of COVID-19 on survivors who continue battling health issues after they were thought to have recovered.
The nationwide study by UCLA will remotely track nearly 5,000 adults for up to two years, with a close look at COVID-19 survivors’ reported and medically documented physical and mental function. That includes neurocognitive function and chronic fatigue.
“In this study, we are asking eligible individuals to share their health information so that researchers and doctors can better understand and improve the long-term clinical care for patients with ongoing health issues post COVID-19 infection,” said Dr. Joann Elmore, a professor of medicine at the David Geffen School of Medicine at UCLA.
The study will be conducted in English and Spanish under the umbrella of INSPIRE – Innovative Support for Patients with SARS COV-2 Infections Registry – a project funded by the Centers for Disease Control and Prevention.
Nationally, researchers hope to recruit 3,600 individuals who test positive for COVID-19 and another 1,200 individuals who test negative as a comparison. The study will gather information online through short, ongoing surveys and will not require participants to see a doctor.
Screening and enrollment will be available through the UCLA study website. The study design allows large-scale data gathering at the participant’s convenience while maintaining the highest degree of confidentiality and security, according to UCLA.
Individuals who are interested in participating in the study must meet the following criteria:
- be age 18 and older;
- be fluent in English or Spanish
- have symptoms known to be associated with COVID-19;
- have been tested for COVID-19 within the previous 28 days, regardless of result, and have not had a prior COVID-19 diagnosis; and
- have access to an internet connection, with a smart phone, tablet, or computer to complete online surveys.
The researchers also are collaborating with patients who have had COVID-19 as part of the study’s Patient and Stakeholder Committee, to ensure that the research is informed by community experience and sensitive to their unique needs and concerns.
Rush University Medical Center in Chicago leads the project. Other participating medical centers include UC San Francisco, the University of Washington, Yale New Haven Health, the University of Texas Houston, the University of Texas Southwestern and Thomas Jefferson University in Philadelphia.
Coronavirus survivors such as Ruben Salazar, 43, who was infected in June, experienced a range of symptoms, including headaches, fever, cough, loss of smell and taste, body aches, difficulty breathing and nightmares.
Salazar spent 10 days at Ronald Reagan UCLA Medical Center – six of those intensive care, including four days in a medically induced coma and on a ventilator.
He has continued to experience fatigue and lightheadedness simply walking or going up a flight of stairs. His memory isn’t as sharp as it used to be and sometimes his mind wanders.
“It’s kind of like a brain fog,” he said.
Salazar hopes that research like the INSPIRE study will help other survivors, as well as medical providers, understand what patients are going through and perhaps lead to some relief.
“I hope it gives answers to questions that people need answers to,” Salazar said. “If I have issues, I hope they have answers for it.”