Linkage Coordinator for Sickle Cell Disease
(RECIPE Trial)
What You Need to Know Before You Apply
What is the purpose of this trial?
This trial aims to find better ways to connect people with Sickle Cell Disease (SCD) to specialized care. It focuses on individuals diagnosed with SCD who have not seen a specialist in over a year. Participants will discuss their treatment experiences, pain, and quality of life through surveys and optional interviews. This trial may suit someone with SCD who has not recently visited a specialist and wishes to share their healthcare experiences. As an unphased trial, it offers a unique opportunity for participants to help improve healthcare connections for others with SCD.
Do I need to stop my current medications for this trial?
The trial information does not specify whether you need to stop taking your current medications. It seems to focus on understanding care pathways rather than changing treatments.
What prior data suggests that this protocol is safe for individuals with Sickle Cell Disease?
Research has shown that using linkage coordinators to help individuals with Sickle Cell Disease (SCD) access appropriate care is safe. Linkage coordinators, trained staff who assist patients in finding the right specialists, play a supportive role. Studies on SCD have reported no harmful effects from using linkage coordinators. The primary goal is to enhance patient engagement with their care, without involving any risky medical procedures or medications. This approach has been well-received, with no reports of negative effects. The aim is to ensure individuals with SCD receive the best possible care.12345
Why are researchers excited about this trial?
Researchers are excited about the RECIPE approach for Sickle Cell Disease (SCD) because it focuses on connecting patients who are not currently receiving specialist care with dedicated linkage coordinators. Unlike standard treatments that typically involve medications like hydroxyurea or blood transfusions, this method emphasizes personalized patient engagement to improve access to specialist care. By fostering direct relationships with trained staff, the approach aims to enhance patient involvement and potentially improve health outcomes, filling a crucial gap in the current care landscape.
What evidence suggests that this method is effective for engaging individuals with Sickle Cell Disease in specialist care?
This trial will evaluate the impact of a linkage coordinator for individuals diagnosed with Sickle Cell Disease (SCD) who are not currently receiving care from an SCD specialist. Research has shown that a linkage coordinator can greatly improve care for people with SCD. For instance, one study found that social workers who assisted patients after hospital discharge led to improved health over the following year. Another study demonstrated that nurse coordinators helped by maintaining communication among healthcare providers and offering patients education and resources. These approaches aim to ensure patients receive necessary care and are better equipped to manage their health. Therefore, a linkage coordinator could effectively enhance the quality of life and care for those with SCD.12678
Who Is on the Research Team?
Julie Kanter, MD
Principal Investigator
University of Alabama, Birmingham (UAB)
Are You a Good Fit for This Trial?
Inclusion Criteria
Timeline for a Trial Participant
Screening
Participants are screened for eligibility to participate in the trial
Engagement
Participants are engaged in care using linkage coordinators to connect them with SCD specialist care
Follow-up
Participants are monitored for their affiliation with SCD-specific care and the effectiveness of engagement strategies
What Are the Treatments Tested in This Trial?
Interventions
- Linkage Coordinator
How Is the Trial Designed?
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 Clinic Near You
Who Is Running the Clinical Trial?
RTI International
Lead Sponsor
Citations
Linkage to Care Intervention to Improve Post-Hospital ...
We conducted a pilot study to determine the effectiveness of a linkage to care intervention with social workers to improve 12-month post-hospital mortality ...
Advancing Health Care Transition for Sickle Cell Disease
Results demonstrated improvements over a 19-month period, with readiness assessment completion increasing 28% and implementation of transition ...
The Role of Nurse Coordinators in Sickle Cell Disease Care
Nurse coordinators ensure communication among providers, and supporting patients with education, advocacy, and access to resources.
Priority Outcomes in Sickle Cell Disease Treatment
A program to understand priorities of patients and caregivers for treatment features and outcomes in sickle cell disease to inform endpoint selection in ...
LCI-HEM-SCD-ST3P-UP-001: A Comparative ...
The purpose of this study is to see if young adults with Sickle Cell Disease (SCD) are better prepared and able to manage their health when moved from pediatric ...
Sickle Cell Data Collection Program, Two States, 2004–2018
The risks for adverse health outcomes in persons with SCD are compounded by racial, socioeconomic, and health care disparities. Approximately 90 ...
Sickle Cell Disease in New York City
Participate in CDC's SCD Data Collection Program, a multi-state effort to assess epidemio- logical trends and health care outcomes among people living with SCD ...
Congressional Report
The National Coordinating Center for the Sickle Cell Disease Treatment Demonstration Program was suported by the Health Resources and Services Administration's ...
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