PRESENCE Study
Patient-friendly certified
What is this?
About the Study
Living with sickle cell can mean dealing with pain that comes out of nowhere. Options to manage that pain don’t always work well. The PRESENCE Study is a U.S. based research project testing a digital program for 16–30 year olds with sickle cell and chronic pain.
This study is exploring:
- Looks at how a digital CBT (Cognitive Behavioral Therapy) program may help with sickle cell pain and emotional stress. It also explores whether support from a peer health coach who has sickle cell or cares for someone with it makes the program more helpful.
- How people can learn CBT tools using a self-guided mobile app to better understand the link between their thoughts, feelings, and actions
Participation information
Countries
United States
Age
16 to 30 years old
Gender
Male
Genotypes
All types of SCD
Study Information
Study type
Survey
Am I Eligible?
Requirements
You may be eligible to participate in this study if you:- Are between 16 and 30 years old
- Have been diagnosed with sickle cell disease (SCD)
- Experience chronic pain or take pain medication
- Have access to a smartphone or tablet (Apple or Android) with internet
- Are willing to complete surveys and use a mobile app regularly
- Are able to give informed consent (or have a parent/guardian do so if under 18)
Restrictions
You can't participate in this study if you:- Do not have sickle cell disease
- Are younger than 16 or older than 30
- Do not have regular access to a smartphone or tablet with internet
- Are currently in another clinical trial that may affect study results
- Have a medical, psychiatric, or cognitive condition that would make it hard to complete study activities
- Are unable to provide informed consent (or don’t have a parent/guardian who can, if under 18)
Study point of contact
| Charles Jonassaint | |
| 877-649-0176 | |
| [email protected] |
Study Sites
- United States, 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
- UPMC Children’s Hospital of Pittsburgh
- Virginia Commonwealth University
- Wake Forest School of Medicine
- Weill Cornell Medical College partnering with Hunter College