Frequently Asked Questions about the UAB RECOVER research study

UAB RECOVER is also working with providers, patients, caregivers, researchers, other federal agencies, and organizations to:

• connect survivors of PASC and Long COVID with research sites where they can join a study;
• connect people who have PASC and/or Long COVID with experts to share their experiences in the search for answers about these conditions;
• and share what we’re learning and help create connections between researchers, participants, and studies to quickly understand, prevent, and treat PASC, including Long COVID.

Scientists and study participants are working together to learn more from research on PASC, including Long COVID. The RECOVER Initiative seeks to quickly improve our understanding of recovery after SARS-CoV-2 infection and to prevent and treat long-term health effects. When research findings are available, that information will be shared on this website and other NIH channels. Be sure to sign up to get updates by email using this link.

We’re also working with providers, patients, caregivers, researchers, other federal agencies, and organizations to:

• connect survivors of PASC and Long COVID with research sites where they can join a study;
• connect people who have PASC and/or Long COVID with experts to share their experiences in the search for answers about these conditions; and
• share what we’re learning and help create connections between researchers, participants, and studies to quickly understand, prevent, and treat PASC, including Long COVID.

This information will come from clinical exams, health records, medical reports, records on the cause of death, and samples from human body tissue. The information will be collected and stored securely in a set of data storage systems in a way that protects privacy and patient information.

The information will be analyzed by researchers and scientists across the country so that we can quickly learn what is needed to prevent and treat PASC.

The RECOVER project includes the main study as well as other large and small studies. Researchers, scientists, other experts, patients, and caregivers planned these studies together. The study plans are written down in what we call “protocols”. Think of the protocol as a study’s playbook or “how-to” guide.

We’re finished planning the full research protocol for adults participating in RECOVER studies. But keep in mind that the study plans may change over time as we learn more. If the protocols change, we’ll update them on the RECOVER website, recovercovid.org.

You can view the study protocol by clicking on this link.

We’ll continue to share the study plans for other RECOVER studies on recovercovid.org. We’ll share these plans in words that will make sense to more people. This way, scientists and people around the world can

• view them,
• ask questions,
• share ideas, and
• work together to make the research better.

We’ll also share the study plans with the people taking part in the RECOVER study (called study participants). Families, loved ones, caregivers, local support groups, or anyone else can look at the study plans.

What We Know: PASC, or post-acute sequelae of SARS-CoV-2, refers to the effects that the virus causing COVID can have on the body after the initial part of the illness.

The term “post-acute” means that the symptoms happen after the initial part of the illness. The word “sequelae” means “consequence.”

PASC is a term that scientists are using to mean the possible long-term consequences of an infection from the virus that causes COVID after the initial part of the illness is over.

For some people, symptoms last weeks or months after the early infection is over. You may hear this condition referred to as Long COVID. Other people can get new symptoms later, even if they didn’t have symptoms at the beginning of the disease.

We are also learning about symptoms from people living with Long COVID and those who call themselves “long haulers,” along with other terms that have come up.

Scientists are working hard to find out what symptoms can occur with Long COVID and why symptoms occur. Some people continue to have the symptoms they had when they were sick with COVID for weeks or months after they were first sick. Other people develop new symptoms later, even after they felt like they were no longer sick. Other people do not feel sick at all in the beginning, but show new symptoms weeks and months later.

Long COVID symptoms may happen in different parts of the body, like the lungs, heart, or brain. Many people have reported different types of symptoms like:

• problems breathing,
• a hard time concentrating or a feeling of “brain fog,”
• problems remembering things,
• feeling anxious,
• having a racing heart, and tiredness or weak muscles.
• Others have reported headaches, loss of smell and taste, cough, and fevers that come and go. Sometimes symptoms seem to go away for a while, but then they come back.

Doctors and scientists are working to figure out why these symptoms occur and if they will go away on their own or need medical treatment, but we do not have answers yet.

We are working with participants in RECOVER research studies to understand the symptoms that people with Long COVID have. We will share what we learn as soon as we can on the RECOVER website and through other channels. To stay up to date with research findings, sign up for email updates.

Congress gave $1.15 billion to NIH to study the long-term health effects of SARS-CoV-2 infection in late December, 2020. Although the primary funding source for RECOVER has changed to the American Rescue Plan (ARP) Act of 2021 (Sec. 2401), the $1.15 billion budget remains and NIH RECOVER research activities have neither stopped nor had any delays. The Department of Health and Human Services trusts the NIH to distribute the ARP funds for the Initiative.

Money provided by the government for research or programs can be called grants, contracts, or awards, including subawards. Early in 2021, awards were given to 30 groups. This includes researchers from hospitals, health centers, and other places. These groups came together to plan the RECOVER studies.

In early fall 2021, the NIH gave $470 million to the RECOVER Clinical Science Core (CSC) to begin to put together a network of sites across the country to study Long COVID. The CSC is led by New York University (NYU) Langone Health and includes more than 100 researchers from more than 25 places that have hundreds of research sites across the country doing studies.

The role of the CSC is to help plan, set up, and watch over the studies. The CSC will also make the materials needed to support the studies, such as information for research participants. They carefully think of ways for all types of people to join and take part in the studies.

To learn more on how RECOVER is paid for, see this NIH news article.

Different studies are enrolling different groups. These groups will include adults, children and their caregivers.

If you’d like to take part in UAB’s study, email COVIDResearch@uabmc.edu.

The National Community Engagement Group (NCEG) is central to RECOVER. NCEG provides a forum that promotes meaningful dialogue through authentic partnership and shared decision-making. The NCEG recognizes that equity and the experiences of patients, caregivers, and community representatives are critical to address the long-term effects of COVID. Members of the NCEG are part of the Executive Committee, Steering Committee, 12 RECOVER Task Force Committees, 6 RECOVER Oversight Committees, and the PASC Intervention Prioritization Panel. Other patients, caregivers, and community representatives are engaging at local study sites and will contribute to developing RECOVER communication messages and materials.

We’ll include representatives

• from different backgrounds, including those who are of different races and ethnic groups, genders, ages, and education levels, and who live in different places;
• who can talk about issues important for children and teens;
• who can talk about issues related to human tissue donation; and
• who are and are not part of groups that advocate for and support people with Long COVID.

The nominations process for RECOVER representatives will occur regularly. Representatives will serve for no more than 2 years. So if you’re not selected the first time around, there will be other chances for you to be selected.

If you have more questions about being a RECOVER representative, please contact the RECOVER Clinical Science Core, who manages the National Community Engagement Group, at RECOVER_CSC@nyulangone.org.

If you want to see more research on COVID, you can visit the National Library of Medicine’s LitCovid website. This is a listing of current scientific information about COVID. Articles are updated daily and sorted by topic, including Long COVID. They are also organized by the place where the study was done.

NIH will ask researchers to share their study ideas and the most promising ideas will lead to specific types of studies, called clinical trials. Clinical trials will test ways (like medicines and other therapies) to treat or prevent the long-term health effects of SARS-CoV-2 infection.

An important part of the RECOVER Initiative is that researchers will keep in touch with patients over a long period of time. This way, they can keep learning from participants and change their study approach as they understand more.

Survivor Corps is a grassroots organization that keeps track of care centers that focus on taking care of people after they have COVID. You can find information about the care centers on their website (Post-COVID Care Centers — Survivor Corps). More clinics are joining this group every day. Your own doctor also may be able to help you find the right care for your needs.

A health care provider will need to decide if a person’s Long COVID condition or symptoms mean they have a disability.

You can learn more about disability coverage for Long COVID at this link from the U.S. Department of Health and Human Services.

As the RECOVER Initiative changes, we will bring together and share the stories and experiences of people affected by PASC, including Long COVID. Stay informed about these events and the latest research findings by signing up for emails from NIH RECOVER.

The best way to protect yourself against long-term effects is to get vaccinated. Also, encourage your friends, family, and neighbors to get the vaccine. Here are ways you can find a COVID-19 vaccination site near you:

• UAB COVID-19 Resources
• Visit and search the Vaccines.gov website
• Text your zip code to 438829
• Call 1-800-232-0233

Currently, many words are being used to describe what can happen to people’s health after they have been infected with the SARS-CoV-2 virus. It can be confusing when more than one word is used to mean the same thing, so we want to make it clear what these words mean.

What We Know: PASC, or post-acute sequelae of SARS-CoV-2, refers to the effects that the virus causing COVID can have on the body after the initial part of the illness.

The term “post-acute” means that the symptoms happen after the initial part of the illness. The word “sequelae” means “consequence.”

PASC is a term that scientists are using to mean the possible long-term consequences of an infection from the virus that causes COVID after the initial part of the illness is over.

For some people, symptoms last weeks or months after the early infection is over. You may hear this condition referred to as Long COVID. Other people can get new symptoms later, even if they didn’t have symptoms at the beginning of the disease.

We are also learning about symptoms from people living with Long COVID and those who call themselves “long haulers,” along with other terms that have come up.

Scientists are working hard to find out what symptoms can occur with Long COVID and why symptoms occur. Some people continue to have the symptoms they had when they were sick with COVID for weeks or months after they were first sick. Other people develop new symptoms later, even after they felt like they were no longer sick. Other people do not feel sick at all in the beginning, but show new symptoms weeks and months later.

Long COVID symptoms may happen in different parts of the body, like the lungs, heart, or brain. Many people have reported different types of symptoms like:

• problems breathing,
• a hard time concentrating or a feeling of “brain fog,”
• problems remembering things,
• feeling anxious,
• having a racing heart, and tiredness or weak muscles.

Others have reported headaches, loss of smell and taste, cough, and fevers that come and go. Sometimes symptoms seem to go away for a while, but then they come back.

Doctors and scientists are working to figure out why these symptoms occur and if they will go away on their own or need medical treatment, but we do not have answers yet.

There may be millions of people with long-term effects from infection with the virus that causes COVID-19. When it comes to Long COVID and more broadly, PASC (post-acute sequelae of SARS-CoV-2 infection), there are more questions than answers.

We are working with participants in RECOVER research studies to understand the symptoms that people with Long COVID have. We will share what we learn as soon as we can on the RECOVER website and through other channels. To stay up to date with research findings, sign up for email updates.