This study aims to help people with Sickle Cell Disease (SCD), a blood disorder causing pain and other health problems, get better care. Researchers want to find patients who haven't been seeing specialists for their SCD. They will use three ways to find these patients: from the community, hospitals, and health records. Once found, trained staff called linkage coordinators will help them get the care they need. Participants will complete a survey about their past and current treatments, pain, and quality of life, and may also choose to do a one-hour interview about their feelings on their SCD treatment.
Key Points:
- Participants must be 18 years or older with confirmed SCD and haven't seen a specialist in over a year.
- Eligible participants will need to fill out a survey and possibly participate in a one-hour interview.
- This study is observational, meaning no new treatments will be given, and it's about understanding and improving care access.
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