RecruitingNCT06385886

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

Sponsor

RTI International

Enrollment

500 participants

Start Date

Jun 8, 2023

Study Type

OBSERVATIONAL

Conditions

Sickle Cell Disease

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

Min Age: 18 Years

Inclusion Criteria4

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

Exclusion Criteria4

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

Interested in this trial?

Get notified about updates and connect with the research team.

Interventions

BEHAVIORALLinkage Coordinator

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.