Recruitment and Engagement in Care to Impact Practice Enhancement (RECIPE) for Sickle Cell Disease
NCT ID: NCT06385886
Last Updated: 2025-06-22
Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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RECRUITING
500 participants
OBSERVATIONAL
2023-06-08
2027-12-31
Brief Summary
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Detailed Description
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Conditions
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Study Design
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CASE_ONLY
PROSPECTIVE
Study Groups
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Individuals diagnosed with Sickle Cell Disease (SCD) but not receiving care from an SCD specialist.
Individuals diagnosed with Sickle Cell Disease (SCD) but unaffiliated from SCD specialist care. These individuals will be connected to a linkage coordinator (trained staff) to provide a patient-centered approach to engagement with SCD specialist care.
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.
Interventions
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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.
Eligibility Criteria
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Inclusion Criteria
* 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 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
18 Years
ALL
No
Sponsors
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RTI International
OTHER
Responsible Party
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Principal Investigators
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Julie Kanter, MD
Role: PRINCIPAL_INVESTIGATOR
University of Alabama, Birmingham (UAB)
Locations
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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
Countries
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Central Contacts
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Facility Contacts
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Other Identifiers
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