CDC awards $9M for long COVID data system

Using the Indiana Network for Patient Care research database managed by the Indiana Health Information Exchange, Indiana University and the Regenstrief Institute will mine data from state electronic health records to determine the prevalence and measure trends and outcomes of persistent COVID-19 symptoms.


Precise, data-driven estimations can help clinicians better understand and treat the range of long COVID health conditions that occur more than four weeks after initial viral infection, according to Dr. Shaun Grannis, Regenstrief vice president for data and analytics and a professor of family medicine at the IU School of Medicine.

“Anecdotal information about long COVID abounds, but what we need is accurate, comprehensive scientific evidence,” said Grannis in a statement. “Our study will provide critical information for public health, patients and the clinicians who care for people with long COVID.”

Researchers will also enroll children, adolescents and adults in the study to track the disease course of recent infections and help measure the burden and outcomes of COVID-19 patients.  

The data could help identify the most affected groups and locations with higher disease burdens and reveal where health disparities exist, paving the way to addressing barriers to healthcare access, added Dr. Brian Dixon, interim director of the Regenstrief Institute Center for Biomedical Informatics and a professor of epidemiology at the Fairbanks School of Public Health.

The grant also supports the training of future public health workers studying at the Fairbanks School of Public Health by developing skills in public health informatics and data science.


Data studies play a critical role in researching lingering COVID-19 symptoms. 

Informatics evaluations related to long COVID and the efficacy of vaccines, dose timing and more has been undertaken by members of the COVID-19 Patient Recovery Alliance partnership and others, including CDC, over the last two years.

Earlier this year, a group of CDC and Louisiana Public Health Institute researchers released a study on their examination of aggregated data from more than 2 million patients who were tested for COVID-19 between March and December 2020, and had medical interactions between 31 and 150 days after testing. 

Those researchers relied on the National Patient-Centered Clinical Research Network, a national-scale research network performing COVID-19 surveillance across 42 healthcare symptoms and one health plan, to compare symptoms and conditions of patients with positive and negative test results, and other variables, like age. 

They found a prevalence of certain conditions related to patients in different age groups and care settings but cautioned that further longitudinal studies extending past six months from acute symptoms were needed to better quantify long COVID outcomes.

Seminal data-driven findings – the result of aggregated EHR data analysis from across a broad suite of electronic record systems by the alliance and Arcadia Leavitt Partners – released on December 15 indicated that vaccinations could reduce the incidence and severity of long COVID symptoms.

Learning from the data to find treatments and cures for long COVID symptoms is also essential to supporting healthcare systems that could become overwhelmed with patients, said Dr. Brett Giroir, former assistant secretary for health and a member of the COVID Patient Recovery Alliance during a HIMSSCast episode in February.

“This incredible information set really can be used in a top-down way,” he said.


“What we learn from Indiana will hopefully lead to innovative approaches for monitoring and treating post-covid conditions nationally,” Dixon said in the statement.

Andrea Fox is senior editor of Healthcare IT News.
Email: [email protected]

Healthcare IT News is a HIMSS publication.

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