Actively Recruiting

Age: 18Years +
All Genders
NCT06385886

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

Led by RTI International · Updated on 2025-06-22

500

Participants Needed

9

Research Sites

233 weeks

Total Duration

On this page

AI-Summary

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?

CONDITIONS

Official Title

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

Who Can Participate

Age: 18Years +
All Genders

Eligibility Criteria

Eligible

You may qualify if you...

  • Persons must be �3e/= 18 years of age
  • Persons must have confirmed SCD
  • Persons not seen by a SCD specialist �3e 1 year +/- 3 months
  • Literacy in English will be required of the consenting patient or parent/guardian
Not Eligible

You will not qualify if you...

  • 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 +/- 3 months

AI-Screening

AI-Powered Screening

Complete this quick 3-step screening to check your eligibility

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Trial Site Locations

Total: 9 locations

1

University of Alabama, Birmingham (UAB)

Birmingham, Alabama, United States, 35233

Actively Recruiting

2

Phoenix Children's Hospital

Phoenix, Arizona, United States, 85016

Actively Recruiting

3

University of California, San Francisco (UCSF)

Oakland, California, United States, 94609

Actively Recruiting

4

Augusta University

Augusta, Georgia, United States, 30901

Actively Recruiting

5

University of Illinois

Chicago, Illinois, United States, 60612

Actively Recruiting

6

Cleveland Clinic

Cleveland, Ohio, United States, 44195

Actively Recruiting

7

University of Pennsylvania

Philadelphia, Pennsylvania, United States, 19104

Actively Recruiting

8

University of Tennessee at Memphis

Memphis, Tennessee, United States, 38163

Actively Recruiting

9

University of Texas at Houston

Houston, Texas, United States, 77030

Actively Recruiting

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Research Team

L

Lisa A Cox, MS

CONTACT

S

Sara Jacobs, PhD

CONTACT

How is the study designed?

Study Type

OBSERVATIONAL

Masking

N/A

Allocation

N/A

Model

N/A

Primary Purpose

N/A

Number of Arms

1

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