Recruitment and Engagement in Care to Impact Practice Enhancement (RECIPE) for Sickle Cell Disease
About this study
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?
- Condition
- Sickle Cell Disease
- Tested
- Linkage Coordinator
- Sponsor
- RTI International
Who can join
- Age
- 18 years and older
- Sex
- All sexes
- Healthy volunteers
- Not accepted
Inclusion 6
- Minimum age: 18 years
- Study condition: Sickle Cell Disease
- 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 4
- 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
Where
9 sites, 9 recruiting
Augusta University
Augusta, Georgia, United States
University of Alabama, Birmingham (UAB)
Birmingham, Alabama, United States
University of Illinois
Chicago, Illinois, United States
Cleveland Clinic
Cleveland, Ohio, United States
University of Texas at Houston
Houston, Texas, United States
University of Tennessee at Memphis
Memphis, Tennessee, United States
and 3 more sites on ClinicalTrials.gov
Contact
-
Lisa A Cox, MS
770-407-4908 lacox@rti.org
-
Sara Jacobs, PhD
770-407-4951 sjacobs@rti.org
Potential match only. Final eligibility is determined by the study team.