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

Status: Recruiting
Location: See all (9) locations...
Intervention Type: Behavioral
Study Type: Observational
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?

Eligibility
Participation Requirements
Sex: All
Minimum Age: 18
Healthy Volunteers: f
View:

• 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

Locations
United States
Alabama
University of Alabama, Birmingham (UAB)
RECRUITING
Birmingham
Arizona
Phoenix Children's Hospital
RECRUITING
Phoenix
California
University of California, San Francisco (UCSF)
RECRUITING
Oakland
Georgia
Augusta University
RECRUITING
Augusta
Illinois
University of Illinois
RECRUITING
Chicago
Ohio
Cleveland Clinic
RECRUITING
Cleveland
Pennsylvania
University of Pennsylvania
RECRUITING
Philadelphia
Tennessee
University of Tennessee at Memphis
RECRUITING
Memphis
Texas
University of Texas at Houston
RECRUITING
Houston
Contact Information
Primary
Lisa A Cox, MS
lacox@rti.org
770-407-4908
Backup
Sara Jacobs, PhD
sjacobs@rti.org
770-407-4951
Time Frame
Start Date: 2023-06-08
Estimated Completion Date: 2027-12
Participants
Target number of participants: 500
Treatments
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.
Sponsors
Leads: RTI International

This content was sourced from clinicaltrials.gov