Making progress toward recovery
Together we can do more. The RECOVER Initiative brings together scientists, clinicians, patients and caregivers to understand recovery from the long-term effects of COVID.
How Research Works
Learn more about how RECOVER studies work, access RECOVER research protocols, and understand what to expect as a participant in RECOVER studies.
RECOVER includes community voices at all levels of the initiative, as we seek diverse experiences to inform our research.
RECOVER uses detailed plans, called research protocols, to keep each of the RECOVER studies on track. These plans often change and are updated as the research progresses.
RECOVER Research Questions
RECOVER researchers compared the use of an International Classification of Diseases (ICD) code to diagnose Long COVID using patients’ electronic health records (EHR). They used EHR data for more than 8,000 people from 28 health care systems. The study, a preprint posted on MedRxiv.org, compared the health data for people who had the ICD-10 code for Long COVID in their EHR on or after October 1, 2021. It also looked at ICD codes in their EHR for other health conditions, symptoms, tests, and treatments within 60 days after Long COVID diagnosis.
This study found that after the ICD Long COVID code was created, many doctors started using it along with other codes. People with the Long COVID code in their EHR had a mix of symptoms and other health conditions. People also often had tests and were given medicines to help with breathing and to reduce inflammation.
These findings will help to understand which people may have had Long COVID before the ICD-10 code was created. This information can be used to inform future treatment and research.
RECOVER Electronic Health Records (EHR) Study Compares Risks of Heart Problems after COVID Infection and mRNA COVID Vaccination
Researchers from RECOVER and the National Patient-Centered Clinical Research Network (PCORnet) compared the risk of heart problems after COVID infection and after mRNA COVID vaccination. They used EHR data from 40 health care systems representing more than 15 million people, aged 5 years or older. The study compared people of similar age, gender, and number of vaccine doses to see what increased the risk of heart problems.
The study found that the risk of heart problems after getting an mRNA COVID vaccine was very low for people of all ages and genders. Also, the risk of having heart problems after having COVID was significantly higher than after getting an mRNA COVID vaccine.
These findings support the continued use of the recommended mRNA COVID-19 vaccine for all eligible people aged 5 or older. See this recent study in the CDC’s Morbidity and Mortality Weekly Report (MMWR).
Progress takes the best science.
The RECOVER Initiative will collect data from many patients across the country. This will include data from medical records to understand how people are experiencing Long COVID. Looking at what happens to patients over time can help us understand their Long COVID story. We will then combine these data to help answer big questions.
The detailed study plan—called the main protocols—is the same for all RECOVER studies. Using the same study plan lets us combine data from different study locations. This helps us get answers to important questions faster.
Also, each study brings specific kinds of information that will help us understand Long COVID. Various groups of people—known as cohorts—will be included in the studies. These include adults, children and their caregivers, and pregnant women and their newborn babies. This will help us understand how different people are experiencing Long COVID.
Improving Understanding Through Collaboration
The NIH All of Us Research Program offers COVID-related data and research tools to RECOVER investigators to help drive understanding of the long-term effects of COVID, including Long COVID and other types of PASC (post-acute sequelae of SARS-COV-2 infection). Through the All of Us Researcher Workbench, interested researchers can access the COVID-19 Participant Experience (COPE) survey, electronic health records (EHR), wearable, and genetic data. To explore the kinds of data available through All of Us and register for access, visit the All of Us Research Hub.