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Recruitment and Engagement in Care to Impact Practice Enhancement (RECIPE) for Sickle Cell Disease
Sponsor: RTI International
Summary
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?
Key Details
Gender
All
Age Range
18 Years - Any
Study Type
OBSERVATIONAL
Enrollment
500
Start Date
2023-06-08
Completion Date
2027-12
Last Updated
2025-06-22
Healthy Volunteers
No
Conditions
Interventions
Linkage Coordinator
The Linkage Coordinator (LC) will be the initial contact with unaffiliated SCD patients to establish a relationship, champion preventative services, and support them in engaging with an SCD specialist by helping patients address barriers to care. Study staff will provide initial and ongoing training to the LC to ensure they have adequate support to effectively engage with patients.
Locations (9)
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