Recruitment and Engagement in Care to Impact Practice Enhancement (RECIPE) for Sickle Cell Disease

Part of paid clinical trials in Birmingham, Alabama.

Sponsor
RTI International
Study ID
NCT06385886
Status
Recruiting
Apply to this trial

Conditions

Eligibility Criteria

Sex
ALL
Age
18 Years - N/A
Healthy Volunteers
Not accepted

Interventions

  • Linkage Coordinator — BEHAVIORAL
    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.

Study Details

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 Dates

Start date
Jun 8, 2023
Status verified
Jun 2025
Primary completion
Oct 31, 2027
Completion
Dec 31, 2027

Study Design

Enrollment
500 participants (estimated)

Arms

  • Arm: 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.

Primary Outcome Measure

Identification of unaffiliated patients [ Time Frame: Beginning of enrollment - end of study (up to 5 years) ]

Central Contacts

Locations (9)

FacilityCityStateZIPSite coordinators
University of Alabama, Birmingham (UAB)BirminghamAlabama35233
Julie Kanter, MD
[email protected]
(205) 934-0435
Phoenix Children's HospitalPhoenixArizona85016
Sanjay Shah
[email protected]
602-933-0920
University of California, San Francisco (UCSF)OaklandCalifornia94609
Marsha Treadwell, PhD
[email protected]
(510) 428-3356
Augusta UniversityAugustaGeorgia30901
Robert Gibson, PhD
[email protected]
(706) 721-1005
University of IllinoisChicagoIllinois60612
Lewis Hsu, MD, PhD
[email protected]
312-355-5019
Cleveland ClinicClevelandOhio44195
Ravi Talati
[email protected]
216.444.5437
University of PennsylvaniaPhiladelphiaPennsylvania19104
Nadia Ali
[email protected]
215-615-6555
University of Tennessee at MemphisMemphisTennessee38163
Ugochi Ogu
[email protected]
901.545.8535
University of Texas at HoustonHoustonTexas77030
Modupe Idowu
[email protected]
(713) 486-5660

Find similar trials in Birmingham, AL

By condition
Sickle cell disease
By research site
University of Alabama, Birmingham (UAB)· Birmingham, ALPhoenix Children's Hospital· Phoenix, AZUniversity of California, San Francisco (UCSF)· Oakland, CAAugusta University· Augusta, GAUniversity of Illinois· Chicago, ILCleveland Clinic· Cleveland, OH

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