Recruitment and Engagement in Care to Impact Practice Enhancement (RECIPE) for Sickle Cell Disease

What to expect

No one can promise a trial will help you personally — that is what the research is trying to find out.

What participation involves

• Procedures mentioned: Interviews

Only what the study's summary and detailed description on ClinicalTrials.gov say. Time periods may describe the whole study or a part of it — ask the study team what applies to you.

Compensation

Not stated

• Study-related exams and procedures are typically provided at no cost. This is how many trials work in general — confirm the details for this study with the study team.
• Participants are monitored closely by the research team throughout the study.
• Some participants may receive access to an investigational treatment, which is still being studied.
• Your participation helps researchers learn whether this approach could help future patients.

About this study

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?

Compensation is read from the study's own description and may be missing — always confirm with the study team.

Eligibility

Study sites (9)