Helping adults with sickle cell disease connect to specialist care
Studies how trained staff help people with sickle cell disease get specialist care.
Key facts
- Who runs it
- RTI International
- Where
- Augusta, Birmingham, Chicago, Cleveland, Houston, Memphis, Oakland, Philadelphia, and Phoenix, United StatesSee the 9 sites
- Trial code
- Registry title
- Recruitment and Engagement in Care to Impact Practice Enhancement (RECIPE) for Sickle Cell Disease
- Status
- Recruiting
- People taking part
- 500 people, planned
- Started
- 8 Jun 2023
- Expected to end
- Dec 2027
- Type of study
- Observational
- Treatments tested
- Linkage Coordinator
- Record updated
- 22 June 2025
Who can take part
AI summary
From the trial's eligibility criteria. Machine-read from the registry text on this page, so it can be wrong. The registry text below and the trial team decide who can take part.
The trial is looking for adults with confirmed sickle cell disease who have not seen a sickle cell specialist for more than 1 year.
- Age
- 18 years or older.
- Sex
- All sexes can join.
- Disease stage
- Confirmed sickle cell disease (SCD). Sickle cell trait alone does not count.
- Earlier treatment
- Has not been seen by a SCD specialist for more than 1 year, give or take 3 months.
Main reasons for not taking part
- Younger than 18 years
- Cannot give informed consent and has no designated caregiver who can consent for them
- Has sickle cell trait (by hemoglobin electrophoresis)
- Seen by a SCD specialist less than 1 year ago, give or take 3 months
The registry criteria, word for word
Show all 8 criteriaShow less
Who can take part
- 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
Who cannot take part
- Persons with sickle cell trait (as per hemoglobin electrophoresis)
- 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 seen by a SCD specialist < 1 year +/1 3 months
Where in United States
- Augusta UniversityAugusta, United StatesContact: Robert Gibson, PhDTaking people
- University of Alabama, Birmingham (UAB)Birmingham, United StatesContact: Julie Kanter, MDTaking people
- University of IllinoisChicago, United StatesContact: Lewis Hsu, MD, PhDTaking people
- Cleveland ClinicCleveland, United StatesContact: Ravi TalatiTaking people
- University of Texas at HoustonHouston, United StatesContact: Modupe IdowuTaking people
- University of Tennessee at MemphisMemphis, United StatesContact: Ugochi OguTaking people
- University of California, San Francisco (UCSF)Oakland, United StatesContact: Marsha Treadwell, PhDTaking people
- University of PennsylvaniaPhiladelphia, United StatesContact: Nadia AliTaking people
- Phoenix Children s HospitalPhoenix, United StatesContact: Sanjay ShahTaking people
About the trial
What the trial wants to find out
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?
The group in the trial
- Individuals diagnosed with Sickle Cell Disease (SCD) but not receiving care from an SCD specialist.
Individuals diagnosed with Sickle Cell Disease (SCD) but unaffiliated from SCD specialist care. These individuals will be connected to a linkage coordinator (trained staff) to provide a patient-centered approach to engagement with SCD specialist care.
Treatment: Linkage Coordinator
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Contact the study team: see the registry record → Contacts and Locations
Print a page for my doctorData and sources
- Registry record
- Listed on ClinicalTrials.gov.
- Official title
- Recruitment and Engagement in Care to Impact Practice Enhancement (RECIPE) for Sickle Cell Disease
- Plain-language title
- Helping adults with sickle cell disease connect to specialist careGenerated from the registry record. The registry title is the official one.
- AI summary
- From the trial's eligibility criteria. Read by machine on 12 November 2026.
- Record updated
- 22 June 2025