Recruitment and Engagement in Care to Impact Practice Enhancement (RECIPE) for Sickle Cell Disease
RECIPE
1 other identifier
observational
500
1 country
9
Brief 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?
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for all trials
Started Jun 2023
Longer than P75 for all trials
9 active sites
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
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Study Timeline
Key milestones and dates
Study Start
First participant enrolled
June 8, 2023
CompletedFirst Submitted
Initial submission to the registry
June 13, 2023
CompletedFirst Posted
Study publicly available on registry
April 26, 2024
CompletedPrimary Completion
Last participant's last visit for primary outcome
October 1, 2027
ExpectedStudy Completion
Last participant's last visit for all outcomes
December 1, 2027
June 22, 2025
June 1, 2025
4.3 years
June 13, 2023
June 19, 2025
Conditions
Keywords
Outcome Measures
Primary Outcomes (2)
Identification of unaffiliated patients
Identification of patients through hospital, surveillance, and community-based pathways.
Beginning of enrollment - end of study (up to 5 years)
Affiliation with a Sickle cell disease (SCD)-specific care with SCD specialist
Rate of affiliation of participants previously unaffiliated with SCD-specific care with an SCD specialist who are now connected to a linkage coordinator and an SCD-specific care with SCD specialist.
Beginning of enrollment - end of study (up to 5 years)
Secondary Outcomes (1)
Scale Out to Other SCD Centers - Implementation in at least 2 other SCD Center study sites
After methods are optimized - end of study (up to 5 years)
Study Arms (1)
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.
Interventions
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
Individuals with Sickle Celle Disease (SCD) who are unaffiliated from SCD care specialists
You may qualify if:
- 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
You may not qualify if:
- 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
Contact the study team to confirm eligibility.
Sponsors & Collaborators
Study Sites (9)
University of Alabama, Birmingham (UAB)
Birmingham, Alabama, 35233, United States
Phoenix Children's Hospital
Phoenix, Arizona, 85016, United States
University of California, San Francisco (UCSF)
Oakland, California, 94609, United States
Augusta University
Augusta, Georgia, 30901, United States
University of Illinois
Chicago, Illinois, 60612, United States
Cleveland Clinic
Cleveland, Ohio, 44195, United States
University of Pennsylvania
Philadelphia, Pennsylvania, 19104, United States
University of Tennessee at Memphis
Memphis, Tennessee, 38163, United States
University of Texas at Houston
Houston, Texas, 77030, United States
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Study Officials
- PRINCIPAL INVESTIGATOR
Julie Kanter, MD
University of Alabama, Birmingham (UAB)
Central Study Contacts
Study Design
- Study Type
- observational
- Observational Model
- CASE ONLY
- Time Perspective
- PROSPECTIVE
- Sponsor Type
- OTHER
- Responsible Party
- SPONSOR
Study Record Dates
First Submitted
June 13, 2023
First Posted
April 26, 2024
Study Start
June 8, 2023
Primary Completion (Estimated)
October 1, 2027
Study Completion (Estimated)
December 1, 2027
Last Updated
June 22, 2025
Record last verified: 2025-06