About this study
Sickle cell disease (SCD) is a group of blood disorders that affect how red blood cells carry oxygen throughout the body. Normal red blood cells are round and flexible and can flow through the blood vessels. In people with SCD, the red blood cells are shaped differently. They are stiff, shaped like bananas. They can stick together and clog blood vessels. This is called a vaso-occlusive crisis (VOC). This complication can cause pain and, in some cases, damage organs.
This study will create a database (registry) about the health and background of people with SCD. This information will help researchers understand how SCD affects different people based on things like:
- Other medical conditions
- Age
- Treatments they receive
The researchers will collect information from patient medical records once per year when they get their regular follow-up visits. This information will be stored in the registry. Participants will complete surveys about their SCD either during office visits or online. They may or may not provide blood or other samples for testing in the lab. The samples may get genetic testing to find out how changes in genes affect SCD.
The goal of this study is to learn more about SCD and what factors may predict future medical problems. This information could lead to better treatments for SCD in the future.
Eligibility overview
- Sickle cell disease
- Any age