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Individuals diagnosed with Sickle Cell Disease (SCD) but not receiving care from an SCD specialist. for Sickle Cell Disease (RECIPE Trial)

N/A
Recruiting
Led By Julie Kanter, MD
Research Sponsored by RTI International
Eligibility Criteria Checklist
Specific guidelines that determine who can or cannot participate in a clinical trial
Must have
Be older than 18 years old
Timeline
Screening 3 weeks
Treatment Varies
Follow Up beginning of enrollment - end of study (up to 5 years)
Awards & highlights
No Placebo-Only Group

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?

Eligible Conditions
  • Sickle Cell Disease

Timeline

Screening ~ 3 weeks
Treatment ~ Varies
Follow Up ~beginning of enrollment - end of study (up to 5 years)
This trial's timeline: 3 weeks for screening, Varies for treatment, and beginning of enrollment - end of study (up to 5 years) for reporting.

Treatment Details

Study Objectives

Study objectives can provide a clearer picture of what you can expect from a treatment.
Primary study objectives
Affiliation with a Sickle cell disease (SCD)-specific care with SCD specialist
Identification of unaffiliated patients
Secondary study objectives
Scale Out to Other SCD Centers - Implementation in at least 2 other SCD Center study sites

Awards & Highlights

No Placebo-Only Group
All patients enrolled in this study will receive some form of active treatment.

Trial Design

1Treatment groups
Experimental Treatment
Group I: Individuals diagnosed with Sickle Cell Disease (SCD) but not receiving care from an SCD specialist.Experimental Treatment1 Intervention
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.

Find a Location

Who is running the clinical trial?

RTI InternationalLead Sponsor
196 Previous Clinical Trials
819,649 Total Patients Enrolled
Julie Kanter, MDPrincipal InvestigatorUniversity of Alabama, Birmingham (UAB)
3 Previous Clinical Trials
6,263 Total Patients Enrolled
~100 spots leftby Oct 2027
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