Recruitment and Engagement in Care to Impact Practice Enhancement (RECIPE) for Sickle Cell Disease
Recruiting · NCT06385886 · Observational (researchers observe without assigning treatment) · Lead sponsor: RTI International
View the official record on ClinicalTrials.gov →Interventions studied
What this trial is about
The goal of this observational study is to help us understand more about the best ways to help individuals living with Sickle Cell Disease (SCD) get the best care. The main question it aims to answer is: How to find individuals unaffiliated from SCD specialist care use three distinct pathways? Once unaffiliated individuals are found using the pathways, Investigators will employ linkage coordinators (trained staff) to engage these patients in care. Participants will be asked to fill out an assessment survey which will cover areas such as previous and current treatment, clinic and hospital experience, pain, and quality of life. Participants will also be given the option of participation in a 1-hour long interview how they feel about treatment for sickle cell disease including clinic experience, pain, and quality of life?
Who can take part
Inclusion criteria
- Persons must be \>/= 18 years of age
- Persons must have confirmed SCD
- Persons not seen by a SCD specialist \> 1 year +/- 3 months
- Literacy in English will be required of the consenting patient or parent/guardian
Exclusion criteria
- Persons \< 18 years of age
- Persons that are unable to provide informed consent and do not have a designated care-giver that can consent on his/her behalf
- Persons with sickle cell trait (as per hemoglobin electrophoresis)
- Persons seen by a SCD specialist \< 1 year +/1 3 months
Where it is running
9 locations listed across 9 US states.
- University of Alabama, Birmingham (UAB) - Birmingham, Alabama, United States
- Phoenix Children's Hospital - Phoenix, Arizona, United States
- University of California, San Francisco (UCSF) - Oakland, California, United States
- Augusta University - Augusta, Georgia, United States
- University of Illinois - Chicago, Illinois, United States
- Cleveland Clinic - Cleveland, Ohio, United States
- University of Pennsylvania - Philadelphia, Pennsylvania, United States
- University of Tennessee at Memphis - Memphis, Tennessee, United States
- University of Texas at Houston - Houston, Texas, United States