RECOVER

Two RECOVER Studies Leverage PCORnet® for New Insights on ‘Long COVID’

Posted on by Jodi Snare

As COVID-19 viral variants continue to spread, so too grows the population of those who experience COVID-19’s effects months after the acute illness has passed. Now two new manuscripts in Nature Medicine and JAMA Pediatrics show how the RECOVER initiative is using PCORnet®, the National Patient-Centered Clinical Research Network, to shed new light on who is impacted and how.

PCORnet: A key tool for RECOVER research

RECOVER research is funded by the National Institutes of Health and aims to understand why some people do not fully recover and develop long COVID. RECOVER brings together patients, caregivers, clinicians, community leaders, and scientists from across the nation and comprises multiple studies at institutions aligned toward this common goal.

PCORnet is a critical resource for RECOVER research because of the Network’s broad and deep data reach representing the everyday encounters of tens of millions of Americans. While most research to date has studied the signs and symptoms of long COVID independently, PCORnet enables a more holistic analysis that can shed light on trends around the condition’s diverse and complex presentations.

New characterizations of long COVID

A major challenge of long COVID is that it has been difficult to pin down how and why it presents across different patients. Now, a RECOVER study has used PCORnet to determine that adults with long COVID generally fall into four adult sub-groups (technically known as subphenotypes) based on the conditions they are diagnosed with following COVID. The results were published in Nature Medicine.

The team explored the electronic health records, or EHRs, of more than 34,000 COVID-positive patients across two PCORnet Clinical Research Networks: INSIGHT and OneFlordia+. By pairing PCORnet-leveraged data with machine learning analysis, the team assessed more than 130 symptoms and conditions before arriving at the following four subgroups that are reproducible, meaning another large-scale study would produce similar results:

  • Patients with new conditions of cardiac and renal symptoms (75% of patients in INSIGHT and 25.43% of patients in OneFlorida+)
  • Patients with new respiratory system, sleep and anxiety problems (75% in INSIGHT and 38.48% of patients in OneFlorida+)
  • Patients with new musculoskeletal and nervous system problems (37% in INSIGHT and 23.35% of patients in OneFlorida+)
  • Patients with new digestive and respiratory symptoms (10.14% in INSIGHT and 12.74% of patients in OneFlorida+)

These findings mark an important disease characterization milestone that could help clinicians and health systems develop more meaningful care models to meet the needs of patients with long COVID.

Long COVID in children

Another study surfaced several key insights about long COVID in children, which were recently published in JAMA Pediatrics. The retrospective cohort study used de-identified EHRs from more than 650,000 children across PEDSNet, a PCORnet Partner Network. All the children were under 21 years old, had previously been tested for COVID-19, and had visited a care provider within PEDSNet at least once in the three years before testing. The study found:

  • The burden of pediatric long COVID that presented to health systems was low, meaning long COVID in children is fairly uncommon.
  • Myocarditis was the most commonly diagnosed long COVID-associated condition in children, which differs from adults.
  • Acute illness severity, young age, and comorbid complex chronic disease increased the risk of long COVID.

These findings suggest that while long COVID impacts both children and adults, it does not impact them in the same way. Future studies, including long-term prospective studies, are needed to more fully characterize trends around how long COVID plays out in different populations.

PCORnet® Is Helping Researchers Unravel the Mystery of Long-Haul COVID

Posted on by Jodi Snare

Today, almost 60 percent of the U.S. has been infected with COVID-19, a figure the CDC says is likely a conservative estimate. While most people infected recover fully in a matter of weeks, millions of people continue to suffer the effects of COVID-19 months—or even years—after initial infection. When COVID-19 effects are felt for this long after initially testing positive, it is described as post-acute sequelae of SARS-Cov-2 (PASC) infection, or “long COVID”. Many facets of long COVID remain a mystery. Who is likely to suffer long COVID? What’s the best way to treat it? What, if any, lasting health effects might long COVID produce? To answer these questions, researchers within PCORnet®, The National Patient-Centered Clinical Research Network, have been funded through the National Institutes of Health RECOVER initiative to leverage PCORnet data resources to understand long COVID in adults and children.

“Studying long COVID is exactly the type of research that the PCORnet infrastructure was designed to support,” said Charles Bailey, co-leader of EHR cohort studies for RECOVER. “We don’t have a reliable definition of the condition yet, so we don’t know what we are looking for. However, using PCORnet resources, we aim to sharpen the clouded picture of long COVID and bring much-needed insights to patients and providers.”

RECOVER’s EHR cohort will be a collaboration across all eight Clinical Research Networks participating in PCORnet, representing 41 institutions across the United States. PCORnet Network Partners provide an unprecedented breadth and depth of real-world data, nationally renowned investigators including informaticians, clinicians, and learning health system experts, and a robust track record for large-scale observational research, comparative effectiveness studies, surveys, and pragmatic clinical trials. RECOVER will use these resources to rapidly generate evidence around long COVID in both adults and children.

Delivering long-awaited answers to long-haul COVID

The EHR cohorts will contribute to the RECOVER Initiative in several meaningful ways, including the creation of new phenotypes, or sets of identifiable characteristics, for long COVID.

One of the most exciting features of RECOVER is that it will use its EHR cohorts to develop models and algorithms that can effectively predict who is at risk of long-haul COVID, answering a question that has puzzled researchers since the pandemic began. These models will also help RECOVER researchers examine disparities between different populations and will further help to illustrate the effects of vaccines on long COVID.

“National-scale research networks like PCORnet have been absolutely essential in helping us get answers through the pandemic, and I’m excited to see the insights RECOVER will contribute to that body of knowledge,” said Bailey. “To patients living with debilitating COVID-19 symptoms for months or years need hope: We see you, and RECOVER is going to relentlessly pursue the answers you’ve long been awaiting.”

PCORnet® Shines at 2022 Health Datapalooza

Posted on by Jodi Snare

Every year, the Health Datapalooza and National Health Policy Conference brings together leaders in data and policy to directly confront the biggest challenges and opportunities facing U.S. health care. As a pivotal resource generating fast, trustworthy answers to health questions raised by the COVID-19 pandemic, PCORnet®, the National Patient-Centered Clinical Research Network, was a hot topic at this year’s event. Researchers showcased how the Network was used across three distinct COVID-related projects during a presentation that demonstrated how PCORnet® empowered rapid COVID-19 insights.

“The concrete results that PCORnet Network Partners delivered through the pandemic are impressive, and this was a wonderful opportunity to share them broadly with an audience of policy leaders, big thinkers and problem solvers,” said Russell Rothman, moderator for the presentation and chair of the PCORnet Steering Committee. “The Network’s collaborative use of data, powerful infrastructure and commitment to patient engagement has made it an important resource for bringing meaningful insights to questions around everything from healthcare worker burnout to national trends, long-COVID, and more. I’m proud of what we’ve accomplished and look forward to using the Network for more good work in the future.”

PCORnet-enabled answers to COVID-19

With access to data from everyday encounters with more than 66 million people across the U.S., PCORnet has long been successfully supporting large-scale, multi-site research. However, interest in the Network surged during the pandemic, when its broad and diverse scope and research-ready infrastructure helped deliver rapid answers to inform public health. PCORnet leaders Russell Rothman, Emily O’Brien, Tom Carton and Suchitra Rao presented at the 2022 conference about results from three different PCORnet-enabled projects:

HERO Research Program: The HERO Research Program was rapidly launched in April 2020 to understand the challenges facing healthcare workers and recruit healthcare workers for COVID-19 research studies. It now includes over 55,000 people in every U.S. state who report on their perspectives and experiences via an online portal. Participants have reported in real-time their intentions to vaccinate, their feelings of moral injury and burnout, thoughts about returning to schools, and more. Through HERO, researchers conducted two important studies on COVID-19 prevention and vaccination.

Collaboration with the CDC: Researchers partnering with the U.S. Centers for Disease Control (CDC) are using PCORnet resources to shape the national understanding of COVID-19 by leveraging electronic health record (EHR) data that has been standardized to the PCORnet® Common Data Model. To date, researchers have used aggregated, de-identified data representing nearly half a million patients with a COVID-19 diagnosis and/or positive lab test to learn about patterns of infection, treatment effectiveness, vaccination, virus variants, healthcare utilization, and complications of infection and recovery.

RECOVER: PCORnet resources are furthering the goals of the NIH-funded Researching COVID to Enhance Recovery (RECOVER) initiative by developing large EHR databases to enhance our understanding of the epidemiology and risk of long-COVID. This PCORnet-enabled research program includes two teams focusing on children and adults respectively and working collaboratively to characterize risk factors for long-COVID.

“Each of these projects are distinct and really showcase the spectrum of PCORnet Network Partner strengths,” said Tom Carton of the Louisiana Public Health Institute, principal investigator for REACHnet, a PCORnet Network Partner, and an investigator with the CDC collaboration. All are enabled by PCORnet and centered around the needs of patients. This is only the beginning.”