Finding and Engaging Patients with Sickle Cell Disease
Recruitment and Engagement in Care to Impact Practice Enhancement (RECIPE) for Sickle Cell Disease
This study is trying to find people with Sickle Cell Disease who aren't getting the care they need and connect them with support to improve their treatment and quality of life.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 500 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | RTI International Academic / other |
| Locations | 9 sites (Birmingham, Alabama and 8 other locations) |
| Trial ID | NCT06385886 on ClinicalTrials.gov |
What this trial studies
This observational study aims to identify individuals with Sickle Cell Disease (SCD) who are not currently receiving specialized care and engage them through trained linkage coordinators. It will utilize three distinct pathways—Community, Hospital, and Surveillance—to locate these unaffiliated patients. Participants will complete an assessment survey covering their treatment history, clinic experiences, pain levels, and quality of life, with an option for a one-hour interview to discuss their treatment perceptions. The study seeks to gather systematic data on this underserved population to improve care strategies and outcomes.
Who should consider this trial
Good fit: Ideal candidates are adults aged 18 and older with confirmed Sickle Cell Disease who have not seen a specialist in over a year.
Not a fit: Patients under 18 years of age or those who have been seen by a specialist within the last year may not benefit from this study.
Why it matters
Potential benefit: If successful, this study could enhance access to specialized care for unaffiliated patients with Sickle Cell Disease, improving their health outcomes.
How similar studies have performed: While this approach is novel in the context of Sickle Cell Disease, similar strategies have shown success in engaging unaffiliated patients in other health conditions, such as HIV.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * 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 Criteria: * 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 this trial is running
Birmingham, Alabama and 8 other locations
- University of Alabama, Birmingham (UAB) — Birmingham, Alabama, United States (Recruiting)
- Phoenix Children's Hospital — Phoenix, Arizona, United States (Recruiting)
- University of California, San Francisco (UCSF) — Oakland, California, United States (Recruiting)
- Augusta University — Augusta, Georgia, United States (Recruiting)
- University of Illinois — Chicago, Illinois, United States (Recruiting)
- Cleveland Clinic — Cleveland, Ohio, United States (Recruiting)
- University of Pennsylvania — Philadelphia, Pennsylvania, United States (Recruiting)
- University of Tennessee at Memphis — Memphis, Tennessee, United States (Recruiting)
- University of Texas at Houston — Houston, Texas, United States (Recruiting)
Study contacts
- Principal investigator: Julie Kanter, MD — University of Alabama, Birmingham (UAB)
- Study coordinator: Lisa A Cox, MS
- Email: lacox@rti.org
- Phone: 770-407-4908
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.