Understanding how RECOVER research works

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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 studies include adults, pregnant people, and children and their caregivers who participate at sites across the United States.

These studies are planned and done in partnership with patients and communities and follow participants from the time they enroll in a study. Studies use information from participants’ medical history and collect new information. Study participants will be asked for information about their health, to have medical checkups, and in some cases, to take special medical tests. These studies are trying to find out how many people have long-term effects from COVID, what their symptoms are, and how the effects occur in the body. The goal is to help people affected by Long COVID get the help they need.

RECOVER researchers are studying Long COVID and other types of PASC (post-acute sequelae of SARS-CoV-2 infection). PASC is the name for all the long-term health effects that people may have after getting COVID.

Learn more about PASC, including Long COVID (PDF, 627 KB)

How RECOVER Studies Work

RECOVER 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:

1.

People are offered a chance to learn about the RECOVER study

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2.

People can volunteer to participate in RECOVER studies

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3.

Researchers decide if the volunteers are eligible to join the studies based on the needs of each study

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4.

Volunteers take part in research activities—such as surveys, tests, and exams—based on the study they’re enrolled in

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5.

Researchers collect and study the data

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6.

Researchers share what they learned with participants, other researchers, clinicians, and the public

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Some RECOVER research participants have Long COVID symptoms and some don’t. Including both groups of people will help us better understand how Long COVID affects people’s health and why some people get Long COVID and others don’t.

What is a Research Protocol?

RECOVER uses 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, follow the same research protocol. That way, we can make sure researchers are collecting the same information about each group of people. 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?

RECOVER Research Protocols

Each type of RECOVER study has a specific protocol.

As part of the protocols, people taking part in RECOVER studies may have different tests or measurements depending on their personal health, their symptoms, and their past experiences.

RECOVER research protocols may change when researchers learn more about post-acute sequelae of SARS-CoV-2 (PASC). Changes to the research protocols will be listed in the latest versions of the protocol and posted to the RECOVER website.

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Adult Study Protocol: Understanding the Long-Term Impact of COVID in Adults

This study will last up to 4 years. In total, about 17,700 people will be in the adult study, of which about 2,450 will be pregnant people. This includes about 15,000 people who have had COVID. We will also include about 2,700 people who never had COVID. How long each person is in the study depends on when they join the study.

View Full Adult Study Protocol (PDF, 1.2 MB)
Version Approved March 28, 2022

View Adult Study Protocol Summary
Coming soon

View the Study Instruments
The following Study Instrument files list the questions used in RECOVER studies, by topic. The specific questions asked of each study participant, at each visit, will vary depending on their clinical history and their responses to earlier questions. The questions are presented here in English, but are also available in Spanish, Chinese, or Arabic upon request.

View the Alcohol and Tobacco Questions (PDF, 34.8 KB)
View the COVID Treatment Questions (PDF, 33.5 KB)
View the Demographic Questions (PDF, 35.1 KB)
View the Disability Questions (PDF, 26.9 KB)
View the Medical History Questions (PDF, 56 KB)
View the PASC Symptoms Questions (PDF, 83.6 KB)
View the Pregnancy Questions (PDF, 41.2 KB)
View the Social Determinants of Health Questions (PDF, 52 KB)
View the Vaccine Status Questions (PDF, 30.3 MB)

View the Source of the RECOVER Study Instrument Questions
Question libraries are used so that researchers working on many studies will ask the same questions of participants. In this way, the research findings from all the studies can be more easily compared. RECOVER used existing questionnaires and question libraries to create many of its questions. The file below lists the source of each question used on RECOVER. The list does not include clinical measurements or laboratory tests that may also be used on other studies.

View the Adult Survey Question Library (XLSX, 61 KB)

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Pediatric Study Protocol: Understanding the Long-Term Impact of COVID in Children and Families

This study will last up to 4 years and will involve up to 20,000 pairs of people, called dyads. The pairs will be children or young adults (ages newborn to 25 years) and their primary caregivers. This will include 800 children with MIS-C, or multisystem inflammatory syndrome in children, and 200 children and young adults with a history of post-COVID vaccine-associated myocarditis. How long each person is in the study depends on when they join the study.

View Full Pediatric Study Protocol (PDF, 2.3 MB)
Version Approved January 31, 2022

View Pediatric Study Protocol Summary
Coming soon

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Human Tissue (Autopsy) Study Protocol

Please check back, as information on this protocol will be added when it becomes available.

What You Can Expect During a RECOVER Study

Once enrolled in RECOVER research, you’ll need to visit a hospital or doctor’s office once or twice a year for the study.

During these visits, you may:

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Answer questions about your life and health

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Get a checkup

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Provide biospecimens or samples, such as blood, urine, or spit

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Get other kinds of test, such as an X-ray or CT scan

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 study, but the research team may follow up with your doctor about your test results.

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Protecting Participants’ Personal Information

RECOVER researchers collect different kinds of data and protecting participants’ personal information is a top priority. We use something called a Limited Data Set that protects your personal information while meeting our research study needs. 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.

Learn more about how RECOVER is organized

Find Studies near you at:
studies.recovercovid.org
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