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

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?

NCT Number	NCT06385886
Lead Sponsor	RTI International
Conditions	Sickle Cell Disease
Enrollment	500 participants
Start Date	2023-06-08
Primary Completion	2027-10 (estimated)
Study Completion	2027-12 (estimated)
Updated on ClinicalTrials.gov	2025-06-22