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 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.

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?
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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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