About this study
People with sickle cell disease are living longer than in the past. But many still have pain, organ damage, and trouble getting regular health care as they grow into adulthood.
New treatments, including gene therapy and bone marrow transplants, are being studied. But there is not enough information about how sickle cell disease affects daily life, health problems, and quality of life over many years. Without this information, it is hard to know how well new treatments work or how care can be improved for people with sickle cell disease.
This study is designed to follow people with sickle cell disease over time. People who join the study do not get a new treatment. Instead, researchers collect information about their health.
Participants complete surveys about pain, daily life, and barriers to health care. Study staff also review medical records to record medicines, hospital visits, lab tests, and other health information. This information is collected when someone joins the study and then about once each year.
Participants may not benefit directly from this study. But the information collected may help doctors and researchers improve care and outcomes for people living with sickle cell disease now and in the future.
Eligibility overview
- Diagnosis of sickle cell disease
- Age 14 years or older