The University of Hawaii John A. Burns School of Medicine is looking for patients recently infected with the coronavirus for a national study on long COVID.
JABSOM is one of several universities participating in the National Institutes of Health’s Researching COVID to Enhance Recovery — or RECOVER initiative — which seeks to understand, prevent and treat post-acute sequelae of SARS-CoV-2, or long COVID.
The causes of long COVID remain a mystery, with no known treatments, according to Dr. Cecilia Shikuma, JABSOM professor of medicine and principal investigator of the Hawaii study.
“We need to find out what is going on,” said Shikuma in a news release. “We do not know what causes long COVID or why long COVID develops in some individuals and not in others. When discussing the syndrome with our patients, it is very frustrating that we can explain very little about why it develops and even less about what can be done about it.”
Shikuma told the Honolulu Star-Advertiser that JABSOM is looking for about 80% of its study participants to be enrolled during the acute stages, which is within one month of the first positive COVID-19 test, to see how many develop long COVID.
But the study is also enrolling those already suffering from long COVID or who contracted the coronavirus and feel fine or never got infected, for a comprehensive analysis.
Locally, COVID has disproportionately affected Native Hawaiians, other Pacific Islanders and Filipinos, who are at higher risk of being infected and becoming severely ill, according to JABSOM.
“We need to find out if these minority populations are also at higher risk for long COVID disease,” Shikuma said.
“Are there socioeconomic or behavioral factors at work here? We know diabetes, cardiovascular disease and other chronic illnesses are seen more often in these populations and that these are also risk factors that predispose individuals to become more severely ill with COVID. Will we find that these chronic diseases also increase the risk of long COVID and are related to higher risk in certain ethnic groups? Could there be immunologic differences that are making a difference?”
An estimated 30% to 50% of people who contract the coronavirus will become long-COVID sufferers, JABSOM said, although exact numbers remain unknown due to lack of data.
This is one of the answers researchers hope to find, along with whether there are ethnic differences and whether there are risk factors that predispose one to long COVID.
The most common prolonged symptoms of long COVID include headache, fatigue, brain fog, shortness of breath, sleep problems, anxiety and depression.
Because many of the reported symptoms are vague and subtle, general physicians tend to underdiagnose the condition. After patients undergo further screening, objective evidence of pulmonary, neurological, cardiac and other organ damage and dysfunction is usually found.
RECOVER plans to recruit more than 17,000 individuals nationally from over 30 different sites for the study.
The study plans to follow participants for up to four years while collecting medical history and symptoms. The initial interview comes with compensation of $100 and less for subsequent ones. The data, stripped of personal information, will be forwarded to a central database.
It is one way to help researchers potentially find a solution for long COVID, Shikuma said.
Those interested in participating or who want more information can visit recovercovid.org, email COVID@hawaii.edu or call the local RECOVER team at 808-692-1335.
