INSTRUCTIONS

• Please save a COPY of this estimated 40-minute presentation before you edit.
• Replace the QR codes through the presentation with your organization’s QR code from Slide 29: Community QR codes.
• Read the pink notes, update the slide accordingly, then delete the note.

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recoverCOVID.org

RECOVER

Long COVID Study

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Introduction to long COVID + the RECOVER study�6:00-6:30pm CT (including 10 min Q&A)

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This event is being recorded and will be shared.�Put questions in the chat!

To hear about future events and participating in the RECOVER study fill out the form at ILLInet.org

Update the time to match your event.

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If your event is not being recorded or shared, please delete.

SAMPLE

Speaker introduction

Jerry A Krishnan, MD, PhD

Lead Principal Investigator

University of Illinois Chicago

Tina Schuh

ILLInet RECOVER Team Project Manager

University of Illinois Chicago

This is an example. Please replace the photos and titles.

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Crop the image into a square. Click on the image twic until the crop marks appear.

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ILLInet.org • recovercovid.org

Introduction to Long COVID (or PASC)

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Acute COVID-19 to PASC�Source: NIH RECOVER Website, 2022

2a�Some start feeling sick with COVID-19 and continue to have symptoms for weeks, months, or longer

2b�Others have new symptoms weeks or months after their first symptoms of COVID-19 resolve.

2c�Some do not have any symptoms or very mild symptoms at first, but start to have symptoms weeks or months later.

1. Most individuals are asymptomatic or recover fully after acute COVID-19 (disease caused by SARS-CoV-2).

2. Recovery from SARS-CoV-2 infection can vary from person to person.

ILLInet.org • recovercovid.org

Most common symptoms 3 or more months after COVID-19

Mermelstein RJ. Post-acute sequelae of SARS-CoV-2 (PASC) in a racially and ethnically diverse sample in Illinois. medRxiv 2021

N=246 adults in Chicago, Peoria, and Urbana completed online survey

recoverCOVID.org

What is a research study?

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What is a research study?�

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• A research study is a plan made by study doctors and other researchers to learn more about things like health problems.

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• Being in a research study is voluntary. That means that you can choose whether or not you want to be in this study.

ILLInet.org • recovercovid.org

What is informed consent?

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Before you decide about being in a research study, you need to know

• What the study is about
• What you will have to do in this study
• The good things that may come out of being part of the study
• The possible risks (or harms) from being in this study.

ILLInet.org • recovercovid.org

The Informed Consent Form

You will need to read the consent form to find out all the information you need to know to decide about being in the study.

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The study doctors and other researchers who reached out to you about the study (also called the study team) will give you the consent form and answer any questions you have.

ILLInet.org • recovercovid.org

When is the study over? Can I leave the study before it ends? �

• The study is planned to last up to 4 years.
• At any time, if you do not wish to continue to be in the study, you are free to leave the study.
• Please keep in mind, that if you change your mind and no longer want to be in the study, you can take back your permission to share your study results.

What are the possible risks or discomforts?

• Loss of privacy
• When we collect and share your study test results and study samples, there is a small risk that people who are not part of the study may get to see it.
• Other possible risks
• Pain from the needles used to get blood for study tests
• Having x-ray radiation in some of the body scans

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ILLInet.org • recovercovid.org

What are the possible good things (or benefits) from being part of the study?

• We do not expect that your health will get better from being a part of this study.
• The study results may help the study doctors and other researchers better understand the long-term effects of COVID.

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ILLInet.org • recovercovid.org

What else can I do if I decide not to be part of the study? �

• You do not have to be part of this research study to have tests for COVID.
• You can talk with your health care provider about tests and treatments that might be available.
• If you decide not to be part of the study, what you decide will not affect your health care in the future, how you pay for health care or if you can get health insurance.

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Introduction to the RECOVER study: �Researching COVID to enhance recovery

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The RECOVER study is designed to help understand why some people experience long-term effects after having COVID-19 and what can be done to speed recovery and prevent it.

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RECOVER is a research initiative from the National Institutes of Health (NIH).

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In Illinois, a group of medical and community organizations are actively designing the study so that we can begin enrolling people who are eligible. We call ourselves ILLInet.

What participants can expect�Everyone who joins RECOVER will have some in-person medical exams and complete some questionnaires

• Most participants will only complete these basic exams that include the collection of specimens (like blood and urine) to help us understand your body at the beginning of the study.
• Later visits will monitor how your body and feelings change �over time.
• Depending on you medical results, and if you get infected/reinfected with COVID, you may be asked to complete additional in-person medical exams. A member of the clinical team will discuss details if needed.

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* Possible additional tests may be asked of you depending on reported symptoms and test results. A member of the clinical team will discuss such tests if they should arise. 

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Protecting participants’ personal information is important

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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.

Your contribution is appreciated!

Free rides are available for participants who live within 15 miles of Mile Square health center @ 1220 S Wood St. in Chicago.

recoverCOVID.org

The national RECOVER website is an excellent resource:

recoverCOVID.org

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• Information about Long COVID
• Up to date information about national Long COVID efforts
• Detailed articles, presentations, + videos
• A form to contact the national RECOVER team about anything that isn’t already available.

recoverCOVID.org

Information that can provide support now:�https://recovercovid.org/faqs

Under “more resources”�

For help with services and assistance, call Disability Information and Assistance Line (DIAL)

888-677-1199 �Monday-Friday �8a.m. to 7 p.m. (Central) �or email DIAL@n4a.org

recoverCOVID.org

Long COVID + RECOVER study updates

1. Long-COVID in the news
2. Updates from the National RECOVER network
3. Updates your local ILLInet RECOVER network
4. Q+A
5. Upcoming events

ILLInet.org • recovercovid.org

A new CDC report was published �on May 24th, 2022.

1. Long-COVID in the news
2. Updates from the National RECOVER network
3. Updates your local ILLInet RECOVER network
4. Q+A
5. Upcoming events

ILLInet.org • recovercovid.org

Information that can provide support now:�https://recovercovid.org/faqs

Under “more resources”�

For help with services and assistance, call Disability Information and Assistance Line (DIAL)

888-677-1199 �Monday-Friday �8a.m. to 7 p.m. (Central) �or email DIAL@n4a.org

recoverCOVID.org

Over 8,600 participants have been enrolled in RECOVER nationally.

1. Long-COVID in the news
2. Updates from the National RECOVER network
3. Updates your local ILLInet RECOVER network
4. Q+A
5. Upcoming events

• Diversity by gender
• About half White, and about half Black, Latino or Hispanic, Asian, American Indian and Native American, Native Hawaiian and Pacific Islander, unknown, multiple races, or other.
• People who recently had COVID-19, previously had COVID-19, and never had COVID-19 have all been enrolled.

Source: NIH RECOVER Portal, 9/22/2022

ILLInet.org • recovercovid.org

Two early learnings and impacts:

1. Long-COVID in the news
2. Updates from the National RECOVER network
3. Updates your local ILLInet RECOVER network
4. Q+A
5. Upcoming events

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Source: NIH RECOVER website, 2022

RECOVER researchers compared the use of an International Classification of Diseases (ICD) code to diagnose Long COVID using patients’ electronic health records (EHR).

Researchers from RECOVER and the National Patient-Centered Clinical Research Network (PCORnet) compared the risk of heart problems after COVID infection and after mRNA COVID vaccination.

ILLInet.org • recovercovid.org

As of 9/20/22�In Illinois, 698 people have been enrolled so far.

1. Long-COVID in the news
2. Updates from the National RECOVER network
3. Updates your local ILLInet RECOVER network
4. Q+A
5. Upcoming events

• So far, mirrors national RECOVER participants
• Diversity by gender
• About half White, and about half Black, Latino or Hispanic, Asian, American Indian and Native American, Native Hawaiian and Pacific Islander, unknown, multiple races, or other.
• People who recently had COVID-19, previously had COVID-19, and never had COVID-19 have all been enrolled.

Source: NIH RECOVER Portal, 2022

ILLInet.org • recovercovid.org

We still need better data.

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…cases of misdiagnosis and mistreatment suggest that even the best studies may underestimate long covid’s impact because racism and sexism within the medical system have left some people undiagnosed.

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�https://www.technologyreview.com/2022/09/20/1059679/racial-disparities-of-long-covid/

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recoverCOVID.org

There is need for greater diversity in engineering and medicine.

�https://www.npr.org/sections/health-shots/2022/07/11/1110370384/when-it-comes-to-darker-skin-pulse-oximeters-fall-short

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EXAMPLE

recoverCOVID.org

Progress take people like YOU!

Complete the form on ILLInet.org

SAMPLE

recoverCOVID.org

We are enrolling people how have COVID or have had COVID in the past 3 week.

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Select “Had COVID in past month”

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How did you find out about us?

A community organization

recoverCOVID.org

Select Bright Star, then submit

Find your organization and delete the other slides.

recoverCOVID.org

Select Illinois Unidos, then submit

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recoverCOVID.org

Select Chicago Urban League, then submit

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recoverCOVID.org

Select Central Illinois Friends, then submit

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recoverCOVID.org

Select Envision Community Services, then submit

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recoverCOVID.org

Select Peoria Friendship House, then submit

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Select Teamwork Englewood, then submit

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recoverCOVID.org

Select Tri-County Urban League, then submit

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recoverCOVID.org

Upcoming Events

Update with your events

ILLInet.org • recovercovid.org

Q+A�Put questions in the chat!

To hear about future events and participating in the RECOVER study fill out the form at ILLInet.org/join-the-recover-study/

SAMPLE

Thank you for joining!�This event is being recorded and will be shared.�

To hear about future events and participating in the RECOVER study fill out the form at ILLInet.org/join-the-recover-study/

SAMPLE

If the presentation is not being recorded or shared, please delete.

Select the correct phone number

Chicago: 855

Peoria: 309

855-461-8185 OR 309-233-0299

ILLInet.org

�recoverCOVID.org

Community QR codes

Please use these QR code for presentations only.

Copy your organization’s QR code and paste replace the sample QR code throughout the presentation.

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Then remove this slide from the presentation.

Bright Star, Chicago Urban League, Teamwork Englewood

Illinois Unidos,

Envision

Friends

Friendship House

Tri-county Urban League

ILLInet.org • recovercovid.org