Understanding how RECOVER research works
Researchers are working with patients, their families, and community members affected by Long COVID to fully understand, diagnose, and treat the condition. Find out how RECOVER research works below.
The RECOVER Research Process
The RECOVER Research Process
RECOVER studies include adults, pregnant people, and children and their caregivers who take part in observational cohort studies and clinical trials at study sites across the United States.
RECOVER studies also examine real-world data from electronic health records (EHRs), blood, saliva, and other samples (called biospecimens) from people with and without Long COVID, and autopsies and biospecimens from people who died after having COVID-19.
Together, these different RECOVER studies are trying to find out:
- How many people may have long-term effects from COVID
- What their symptoms are
- How the effects of Long COVID occur in the body
- How COVID affects body tissues
- Which treatments for Long COVID might be helpful
Observational Cohort Studies
RECOVER researchers plan and conduct observational studies in partnership with patients and communities. Study participants provide information about their health, get medical checkups, and may also take special medical tests. RECOVER researchers use these medical histories as well as new information they learn throughout the study.
RECOVER observational study participants do not receive any treatment for Long COVID. If you choose to take part, you won’t be required to take any medication or receive injections or shots of any kind. You will receive compensation for taking part in the study.
Clinical Trials
In clinical trials, some study participants receive treatments like medicines and other therapies (called interventions) to help with the long-term effects of COVID-19.
Autopsy and Tissue Pathology Studies
Autopsy and tissue pathology studies look at the effects of COVID on the body tissues of people who died after having COVID to understand changes in the body.
RECOVER researchers are studying Long COVID and other types of long-term symptoms related to COVID-19.
How RECOVER Studies Work
RECOVER research studies are taking place at more than 200 study sites across the country. Doing research in many different places—and including people from all races and ethnic groups, genders, and ages—helps us learn about how the symptoms of Long COVID affect everyone. This way, what we learn will reflect the diverse experiences of people across the country.
All RECOVER studies follow the same basic steps:
People have opportunities to learn about RECOVER studies.
People decide to take part in RECOVER studies.
Researchers decide if the participants are eligible to join the studies based on the needs of each research team.
Participants take part in surveys, tests, exams, treatments, and other research activities, depending on the type of study they’re enrolled in.
Researchers collect and review personal information and health data from people who take part in studies.
Researchers share what they learned with participants, other researchers, clinicians, and the public.
Some RECOVER research participants have Long COVID symptoms and some don’t. Some study participants have never had COVID. Including all of these people in RECOVER studies will help us better understand how Long COVID affects people’s health and why some people get Long COVID and others don’t. That means you can take part in a RECOVER research study even if you haven’t had COVID.
What You Can Expect During a RECOVER Study
RECOVER observational cohort studies involve keeping in touch with large groups of people over a long period of time. If you enroll in a RECOVER observational study, you’ll need to visit a hospital or doctor’s office once or twice a year for the study.
During these visits, you may:
Answer questions about your life and health
Get a checkup
Provide blood, urine, or other samples (called biospecimens)
Get other kinds of tests, such as an X-ray or CT scan
You will not receive any treatment for Long COVID as part of a RECOVER observational study. You won’t be required to take any medication or receive injections or shots of any kind.
The research team may also ask you to keep track of your symptoms, your physical activity, and your sleep between visits. The research team may also follow up with your doctor about your test results.
Learn more about RECOVER observational cohort studies.
RECOVER clinical trial studies have started enrolling participants. During clinical trials, researchers test the safety and effectiveness of new medical treatments.
What is a Research Protocol?
RECOVER studies use research protocols to keep all the studies on track.
A protocol is a detailed plan that researchers follow. Think of a guide with step-by-step instructions.
RECOVER research teams who are studying the same group of people or the same type of treatment follow the same research protocol. This way, we can make sure researchers working on the same study are collecting the same type of information even if they don't work together directly.
Protocols also help researchers make connections across different studies so we can find answers about Long COVID faster.
Each RECOVER research protocol covers topics like:
- What is the goal of the study?
- Who is eligible to take part in the study?
- How are people in the study protected against risks?
- Which tests, procedures, and treatments will researchers use?
- How long is the study expected to last?
- How will researchers collect the information?
- How will researchers use this information?
Learn more about the research protocols used by RECOVER observational cohort studies and clinical trials.
Protecting Participants’ Personal Information
Because RECOVER researchers collect different kinds of data about people, protecting participants’ personal information is a top priority.
When researchers gather data from medical records, they only use the information needed for the study. For example, they will assign a participant ID number to each study participant. Researchers can then use this ID number to connect participant data across different sources of information. Researchers also keep participant information in a secure database.
When RECOVER researchers publish their findings, they will never share information that identifies people who took part in the study. Like most research studies, RECOVER has several groups that watch over the studies to protect patients, monitor the research, and track progress. These groups include:
- Oversight committees: Groups that supervise and help plan, track, and support RECOVER studies. Each oversight committee includes researchers and other key leaders, patients, caregivers, and community members.
- Observational Study Monitoring Board (OSMB): A group that monitors the study data and how the study is working. The OSMB makes recommendations to correct any problems with the study.
- Institutional Review Board (IRB): A group that reviews research activities to make sure the rights and safety of people who take part in research are protected, both before the research starts and as it proceeds.
Learn more about questions to ask when participating in research.