Don’t let Sickle Cell stop you from showing up!

African American young couple looking smart phones together standing against white wall

Don’t let Sickle Cell stop you from showing up!

Join PRESENCE! A Digital Cognitive Behavioral Therapy (CBT) study for 16-30 year olds living in the US with Sickle Cell Disease (SCD) and chronic pain.

Peer suppoRt for adolescents and Emerging adults with Sickle cell pain: promoting Engagement in Cognitive behavioral thErapy (PRESENCE)

Peer suppoRt for adolescents and Emerging adults with Sickle cell pain: promoting Engagement in Cognitive behavioral thErapy (PRESENCE)

The PRESENCE Study is part of the National Institutes of Health (NIH) HEAL Initiative’s Pain Management Effectiveness Research Network (ERN), a national effort to support clinical trials that compare the effectiveness of existing non-addictive pain therapies as well as existing or novel approaches for pain prevention and management.

NIH HEAL Initiative® and The Helping to End Addiction Long-term® are trademarks of the U.S. Department of Health and Human Services.

The PRESENCE Study is part of the National Institutes of Health (NIH) HEAL Initiative’s Pain Management Effectiveness Research Network (ERN), a national effort to support clinical trials that compare the effectiveness of existing non-addictive pain therapies as well as existing or novel approaches for pain prevention and management.

NIH HEAL Initiative® and The Helping to End Addiction Long-term® are trademarks of the U.S. Department of Health and Human Services.

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I AM INTERESTED
Young woman using a digital tablet at home

About PRESENCE

SCD often causes repeated unpredicted pain crises, especially in teens and young adults, and there are few treatment options shown to work. PRESENCE is a national digital CBT research study for 16-30 year olds living in the US with SCD and chronic pain. CBT is a therapy that teaches people how to see if their thoughts change their feelings and actions.

The PRESENCE Study:

• Looks at how digital CBT helps with SCD pain and the negative feelings it may cause.

• Wants to learn if digital CBT with or without peer health coach (defined as a young adult with SCD or a SCD caregiver) support is more helpful.

• Provides an opportunity to teach CBT skills related to thoughts, feelings, and actions through a self-guided mobile app.

Teenager in bedroom using smart phone and wireless headphones

Joining PRESENCE

You may be able to join the PRESENCE Study if you:

You are 16-30 years old.

Have SCD.

Have chronic pain OR take pain medication.

Have an Apple/Android device with internet access.

Cost: None.

Compensation: up to $400.

Participant duration: 1 year.
Risk: As with any research study, there is the risk that personal information could be lost. We will do everything we can to keep your
information private.
Why Join:

Participating may help you manage your pain better and improve how you feel.

All participants will have access to the pain tracking app.

This study could improve medical care for people with SCD pain in the future.
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One Black businessman working at new business from modern office using digital tablet

Joining PRESENCE

You may be able to join
the PRESENCE Study if you:

16-30 years old with SCD.

Have chronic pain OR take pain medication.

Have an Apple/Android device with internet access.

Cost: None.

Compensation: up to $400.

Participant duration: 1 year.
Risk: As with any research study, there is the risk that personal information could be lost. We will do everything we can to keep your
information private.
Why Join:

Participating may help you manage your pain better and improve how you feel.

All participants will have access to the pain tracking app.

This study could improve medical care for people with SCD pain in the future.
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What to Expect

First, you’ll answer some questions about yourself to make sure the study is a good fit for you. During your participation, in addition to receiving your routine medical care, you’ll be randomly placed into 1 of 3 groups, respond to surveys, and use a digital app to complete the following:

CBT+ Peer Support group:

1. A daily diary for pain, mood, and medication use.
2. A digital CBT program for 12 weeks.
3. Weekly 1-on-1 peer health coach sessions for 12 weeks.

Self-Guided CBT group:

1. A daily diary for pain, mood, and medication use.
2. A digital CBT program for 12 weeks.

Usual Care (UC) group:

1. A daily diary for pain, mood, and medication use.

Mother Talking With Teenage Daughter At Home As She Checks Social Media On Mobile Phone

Participating in the PRESENCE study is up to you. If you join, you can leave the study at any time.

Participating in the PRESENCE study is up to you. If you join, you can leave the study at any time.

Partnering Sites

We currently partner with clinical sites and community-based organizations across the nation to support the dissemination of our reach and assist with our recruitment goals.
    • Ann Robert H. Lurie Children’s of Chicago
    • Connecticut Children’s Medical Center
    • East Carolina University
    • Emory University partnering with Morehouse School of Medicine
    • Johns Hopkins University
    • Rutgers, The State University of New Jersey
    • University of California, Irvine
    • University of California, Los Angeles
    • University Hospitals/Rainbow Babies, Case Western
    • University of Michigan at Ann Arbor/The Regents of the University of Michigan
    • University of Rochester
    • University of South Alabama

Partnering Community-Based Organizations:

    • Alfaafia (Milwaukee, WI)
    • Children’s Sickle Cell Foundation (Pittsburgh, PA)
    • Dreamsickle Kids Foundation (Las Vegas, NV)
    • Sickle Cell Foundation of MN (Minneapolis, MN)
    • Sickle Cell Medical Advocacy Inc. (Orlando, FL)
I AM INTERESTED
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  • Ann Robert H. Lurie Children’s of Chicago – Lurie Children’s Hospital
  • Connecticut Children’s Medical Center – Connecticut Children’s
  • East Carolina University
  • Emory University partnering with Morehouse School of Medicine – Arthur M Blank (AMBH) clinic or the Hughes Spaulding (HS) clinic
  • Johns Hopkin
  • Rutgers, The State University of New Jersey – Rutgers Health NJ
  • University of California, Irvine – UC Irvine
  • University of California, Los Angeles – UCLA Health
  • University Hospitals/Rainbow Babies, Case Western – University Hospitals Cleveland Medical Center
  • University of Michigan at Ann Arbor/The Regents of the University of Michigan – Mott Children’s Hospital Pediatric Hematology Clinic or the Rogel Cancer Center Hematology Oncology Clinic  
  • University of Rochester – University of Rochester Pediatric Sickle Cell Clinic or the Complex Care Center
  • University of South Alabama – USA-J. Haynes Jr. MD Sickle Cell Center
  • UPMC Children’s Hospital of Pittsburgh – Children’s Hospital of Pittsburgh 
  • Virginia Commonwealth University
  • Wake Forest School of Medicine
  • Weill Cornell Medical College partnering with Hunter College – Weill Cornell Medicine or New York Presbyterian 

Partnering Community-Based Organizations:

    • Alfaafia (Milwaukee, WI)
    • Children’s Sickle Cell Foundation (Pittsburgh, PA)
    • Dreamsickle Kids Foundation (Las Vegas, NV)
  • Sickle Cell Foundation of MN (Minneapolis, MN)
  • Sickle Cell Medical Advocacy Inc. (Orlando, FL)
I AM INTERESTED
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Contact Us

I AM INTERESTED

Toll-free number: 877-649-0176

@presence_study


@presencestudy