Finding and Engaging Patients with Sickle Cell Disease
Official title: Recruitment and Engagement in Care to Impact Practice Enhancement (RECIPE) for Sickle Cell Disease
Run by RTI International · NCT06385886 · Data updated 2026-11-12
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 |
|---|---|
| Ages | 18 Years and up |
| Sex | All |
| Enrollment | 500 (estimated) |
| Sponsor | RTI International Academic / other |
| Locations | 9 sites (Birmingham, Alabama and 8 other locations) |
| Status | Recruiting |
| Started | June 8, 2023 |
| Main results expected | October 2027 |
| Study ends | December 2027 |
| Registry record updated | June 22, 2025 |
| Trial ID | NCT06385886 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a 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.
✕Probably 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.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
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.
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 gone: 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.
Who can join: the full rules
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 it's running
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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
Show 3 more locations
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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
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
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Cerebrovascular Reactivity Testing with HD-DOT in Sickle Cell Patients
This study tests whether high-density diffuse optical tomography can measure brain blood flow and oxygen use in people with sickle cell disease, to see how these signals relate to stroke risk.
-
Adapting and testing PEN-Plus in Zambian primary care
Aiming to see if the PEN-Plus package can be adapted and used in two Zambian hospitals to better manage chronic diseases like heart disease, diabetes, hypertension, and sickle cell in primary care.
-
Newborn Sickle Cell Screening in Mozambique
We’re testing a three-part plan to help babies in Mozambique get diagnosed early for sickle cell disease and start care quickly.
-
Optimizing Hydroxyurea in Children with Sickle Cell in Africa
This study tests whether raising hydroxyurea to a maximum tolerated dose is safe and beneficial for Ugandan children with sickle cell anemia already taking a fixed daily dose.
-
Hematopoietic stem cell editing to treat sickle cell disease
This study tests whether a patient’s own blood stem cells can be edited to remove the sickle cell triggering gene and then returned to the patient.
-
Virtual reality options to help with VOC pain in adults with SCD
This study tests whether headset-based virtual reality can help reduce pain for adults with sickle cell disease during vaso-occlusive crises treated in an infusion center.
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.