Understanding how RECOVER research works
Researchers are working with patients, their families, and community members affected by Long COVID to develop the RECOVER research protocols and to get their input across all levels of the RECOVER Initiative. Find out how RECOVER research works.
The RECOVER Research Process
The RECOVER Research Process
RECOVER observational study participants do not receive any treatment for Long COVID. If you choose to participate, you won’t be required to take any medication or receive injections or shots of any kind. You will receive compensation for participating in the study.
These studies are planned and done in partnership with patients and communities. RECOVER researchers use information from participants’ medical history as well as new information that they learn throughout the study. Study participants will be asked to provide information about their health, to have medical checkups, and in some cases, to take special medical tests. Some participants will join studies that give treatments like medicines or other therapies to help with the long-term effects of COVID. Other RECOVER studies will look at the effects of COVID on the body tissues of people who died after having COVID, and other studies will look closely at tissues from laboratory animals to understand changes in the tissues after COVID infection.
All together, RECOVER studies are trying to find out
- how many people may have long-term effects from COVID
- what their symptoms are
- how the effects occur in the body
- how COVID affects body tissues
- which treatments for Long COVID might be helpful.
How RECOVER Studies Work
RECOVER research studies are expected to take place at more than 200 research 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 are offered a chance to learn about the RECOVER study
People decide to participate 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 research activities—such as surveys, tests, exams, and treatments—depending on the type of study they’re enrolled in
Researchers collect and review the study data
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 participate in a RECOVER research study even if you haven’t had COVID.
What You Can Expect During a RECOVER Study
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 biospecimens or samples, such as blood, urine, or spit
Get other kinds of test, 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. You won’t get any treatment for Long COVID as part of the observational study, but the research team may follow up with your doctor about your test results.
RECOVER clinical trial studies will begin enrolling soon. More information about what to expect from those studies will be posted to this site when it is available.
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, such as adults or newborn babies, or those who are studying the same type of treatment, follow the same research protocol. That 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?
Protecting Participants’ Personal Information
RECOVER researchers collect different kinds of data about people, so protecting participants’ personal information is a top priority. When data is gathered from medical records, only the information needed for the study is used. Instead each study participant is assigned a participant ID number that is used to connect their data across different sources of information. When the study findings are published, no information that identifies people will ever be used. Participants’ information is kept in a secure database that only very few people can access.
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 that may come to light.
- 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.