Don’t let Sickle Cell stop you from showing up!
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.
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 living 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.
Joining PRESENCE
You may be able to join the PRESENCE Study if you:
You may be able to join
the PRESENCE Study if you:
Living in the US.
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.
Joining PRESENCE
You may be able to join
the PRESENCE Study if you:
Living in the US.
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.
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:
- A daily diary for pain, mood, and medication use.
- A digital CBT program for 12 weeks.
- Weekly 1-on-1 peer health coach sessions for 12 weeks.
Self-Guided CBT group:
- A daily diary for pain, mood, and medication use.
- A digital CBT program for 12 weeks.
Usual Care (UC) group:
- A daily diary for pain, mood, and medication use.
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
-
- Lurie Children’s Hospital
- Connecticut Children’s
- East Carolina University
- Arthur M Blank (AMBH) clinic or the Hughes Spaulding (HS) clinic
- Johns Hopkins
- Rutgers Health NJ
- UC Irvine
- UCLA Health
- University Hospitals Cleveland Medical Center
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)
- Lurie Children’s Hospital
- Connecticut Children’s
- East Carolina University
- Arthur M Blank (AMBH) clinic or the Hughes Spaulding (HS) clinic
- Johns Hopkins
- Rutgers Health NJ
- UC Irvine
- UCLA Health
- University Hospitals Cleveland Medical Center
- Mott Children’s Hospital Pediatric Hematology Clinic or the Rogel Cancer Center Hematology Oncology Clinic
- University of Rochester Pediatric Sickle Cell Clinic or the Complex Care Center
- USA-J. Haynes Jr. MD Sickle Cell Center
- Children’s Hospital of Pittsburgh
- Virginia Commonwealth University
- WAKE
- Weill Cornell Medicine or New York Presbyterian
Partnering Community-Based Organizations:
- B Strong Group (Columbia, SC)
- Children’s Sickle Cell Foundation (Pittsburgh, PA)
- Dreamsickle Kids (Las Vegas, NV)
- Sickle Cell 101 (San Jose, CA)
- Massachusetts Sickle Cell Association (Dorchaster, MA)
