Discover what the latest science from the RECOVER Initiative means for our ability to understand, diagnose, prevent, and treat Long COVID.
This page contains descriptions of findings from RECOVER research studies. These descriptions use plain language and a format that is easy to understand.
If you want to learn more about the scientific discoveries described here, you can also browse and search the complete list of RECOVER Publications.
In this RECOVER study, researchers wanted to understand the connection between Long COVID and chronic kidney disease (CKD) in adults who had COVID-19. CKD is long-term, permanent damage to the kidneys. Researchers looked at the electronic health records (EHRs) of more than 2 million adults across 59 health systems in the US to see if people with CKD were more likely to develop Long COVID. The study found that, compared to people without CKD, those who had even mild cases of CKD were more likely to get Long COVID after COVID-19. Researchers also found that, compared to adults who did not get Long COVID, those who developed Long COVID and had healthy kidneys before getting COVID-19 were more likely to develop new CKD or have worsened kidney function within a year. These findings show how Long COVID and kidney disease can affect each other and highlight how important it is for doctors to monitor people’s kidney health after they get COVID-19.
This RECOVER study looked at how social determinants of health (SDoH) affect the risk of developing Long COVID after getting COVID-19. SDoH are the living and working conditions that affect a person’s health, such as how safe a neighborhood is, access to education, and how easy it is to get healthcare. Between October 2021 and November 2023, RECOVER researchers studied adults from 33 states, Washington, DC, and Puerto Rico who recently had COVID-19. These adults filled out surveys about their social situations, health conditions, and pregnancy status. The researchers followed them for 6 months to see who developed symptoms of Long COVID. They looked at SDoH including money problems, not having enough food, level of education, problems getting health care, having friends or family for support, and where someone lives. Out of 3,787 participants, 418 people (about 11%) developed Long COVID. Researchers found that people with money problems, not enough food, less education, trouble getting healthcare, and little social support had a higher risk of experiencing Long COVID. The researchers suggest that future studies explore whether addressing SDoH-related needs can help lower the chance of developing long-term effects of COVID-19.
In this RECOVER study, researchers wanted to find out whether children (ages 5–12) and teenagers (ages 12–20) who had COVID-19 were more likely to develop mental health conditions than those who never had COVID-19. Researchers studied the electronic health records (EHRs) of more than 1 million children and teenagers to see what mental health conditions they were diagnosed with after getting COVID-19. They found that children who had COVID-19 were more likely to be diagnosed with anxiety, obsessive-compulsive disorder (OCD), attention-deficit/hyperactivity disorder (ADHD), and autism. The researchers also found that teenagers who had COVID-19 had a higher risk of experiencing anxiety, depression, and thoughts of suicide. This study is important because it suggests that getting COVID-19 can increase the chance that young people will experience mental health conditions. Caregivers and doctors must recognize the risk of mental health conditions developing after COVID-19 to help young people get the treatment and support they need.
This RECOVER study explored how the experiences of people who have had COVID-19, their caregivers, and community members can make sure patients’ voices are heard in Long COVID research. In the RECOVER Initiative, these people are called Representatives. RECOVER created a system called Representative Authorship to let Representatives join writing groups and contribute to writing scientific papers about RECOVER research. Representatives’ experiences help researchers focus on what matters most to patients, make findings easier to understand, and connect the research to real-world care. In this study, researchers surveyed RECOVER Representatives about what worked well and what could be improved in the Representative Authorship system. They found that most Representatives had positive experiences and felt that they were matched with the right scientific papers based on their background and experiences. Representatives stated that having different points of view can keep research meaningful for doctors treating patients with Long COVID. The survey also highlighted areas to improve. When including Representatives in manuscripts, researchers should communicate clearly, train new authors, and make sure that people are paid fairly for their time. The RECOVER Initiative learned that by considering the viewpoints of Representatives, they can improve their writing system and write papers that reflect the needs and experiences of the larger Long COVID community.
This RECOVER study looked at how common Long COVID is in adults and children across the US. Researchers compared people who had COVID-19 to those who didn’t. They used data from 3 nationwide research networks that collect electronic health records (EHRs). Since there is no single definition for Long COVID yet, each network created its own working definition. These were based on earlier studies and symptoms that are commonly seen in people with Long COVID. Researchers then checked how many people had those symptoms between 1 and 6 months after having COVID-19. Findings were generally similar across the 3 networks. They found that about 4 out of every 100 children, and between 10 and 26 out of every 100 adults, developed Long COVID, depending on the definition of Long COVID used. The rates of Long COVID also changed over time, likely linked to new versions of the virus. Understanding how common Long COVID is and how this changes over time can help researchers learn who is most likely to get Long COVID.
This RECOVER study looked at the link between COVID-19 severity (how mild or serious the illness was) and the chance of developing an autoimmune disease. COVID-19 severity ranged from no symptoms to being in the hospital and needing a breathing machine. The study also looked at which types of autoimmune diseases were most common after having COVID-19. Autoimmune diseases happen when the body’s immune system attacks its own healthy cells by mistake. Researchers used electronic health records (EHRs) from 3 nationwide research networks to study people who had COVID-19 between April 2020 and April 2021. They found that the most common autoimmune diseases in both children and adults after having COVID-19 were thyroid disease, a skin condition called psoriasis, and a gut problem called inflammatory bowel disease. In adults, inflammatory arthritis and Sjögren’s disease (an autoimmune disease that causes dry eyes, dry mouth, and joint pain) were also common. In children, Type 1 diabetes and autoimmune diseases involving blood were also found. The study's main finding was that people who were more severely ill from COVID-19 had a higher chance of developing an autoimmune disease than those who were less sick. This means that people with more severe illness likely had stronger immune reactions to COVID-19. This study shows a strong relationship between having severe COVID-19 and developing an autoimmune disease after getting COVID-19.
This paper builds on an earlier RECOVER study about Long COVID symptoms in school-age children (ages 6 to 11 years old) and teenagers (ages 12 to 17 years old). In this study, RECOVER researchers focused on two younger age groups that they did not study before, including infants and toddlers (ages 0 to 2 years old) and preschool-age children (ages 3 to 5 years old). The study compared symptoms in children who had COVID-19 in the past with those who never had it. Researchers created new tools to help figure out which young children were most likely to have Long COVID based on their age group and symptom patterns. The symptoms that were most likely to be signs of Long COVID in infants and toddlers were poor appetite for a long period of time, trouble sleeping, coughing, and stuffy nose. For preschool-age children, the most likely signs were daytime tiredness, sleepiness or low energy, and coughing. Children with these symptoms often had worse overall health, lower quality of life, and delays in development. The tools from this study can be used in future studies to better understand Long COVID in young children and develop ways to care for them. This study is important because it shows that Long COVID symptoms in young children are different from those in older children and adults.
This RECOVER study looked at whether people with Human Immunodeficiency Virus (HIV) are more likely to get Long COVID after having COVID-19. HIV is a virus that attacks the body’s immune system. Researchers used electronic health records (EHRs) from 2 nationwide research networks of people ages 21 and older who had COVID-19. They divided them into 2 groups: people with HIV and people without HIV. Researchers used 2 methods to find people in the groups who might have Long COVID. One used a computer system that looked for Long COVID symptoms in medical records. The other looked for official diagnosis codes that doctors enter when they think someone has Long COVID. They found that people with HIV may have a slightly higher risk of being diagnosed with Long COVID when looking for Long COVID symptoms in medical records. However, they found that there was no clear link between having HIV and receiving the official diagnosis code for Long COVID. This suggests that Long COVID may be missed in people with long-term health problems like HIV.
This RECOVER study looked at how COVID-19 can impact people’s physical abilities. Researchers looked at 3 groups of adults in the RECOVER study: people who never had COVID-19, people who had COVID-19 in the last 3 months, and people who had COVID-19 more than 3 months ago. They wanted to know if people who had COVID-19 were more likely to have trouble with daily activities like walking, climbing stairs, or getting in and out of a chair compared to those who never had COVID-19. To measure physical ability, participants were asked to sit in a chair and stand up as many times as they could in 30 seconds. This study didn't find big differences in physical abilities between the groups, but those who had severe COVID-19 and long-lasting symptoms faced more challenges. This study is important because the findings show that COVID-19 may have long-term impacts on physical function.
