SoNIC Teens Study: Sickle Cell Neurological Impact and Cognition in Teenagers

Summary and Objectives

Sickle Cell Disease (SCD) is an inherited blood disorder, primarily affecting individuals of African American descent. At present, approximately 1 out of every 365 African American babies are born with SCD.

Oxygen is essential for every part of the body, and it’s carried through the bloodstream by red blood cells. Normally, these cells are round and move easily through blood vessels. In people with SCD, however, red blood cells are shaped like crescents or sickles. These misshapen cells don’t carry oxygen as well and can stick together, blocking blood flow. This can prevent oxygen and nutrients from reaching vital organs, including the brain.

The brain is a powerful and dynamic organ—it controls our thoughts, emotions, memory, movements, and much more. Even though it makes up only about 2% of the body’s weight, it uses a large amount of energy and requires a constant supply of oxygen to function properly. When the brain doesn’t get enough oxygen, it can become damaged, affecting a person’s ability to think, learn, remember, or make decisions.

Adolescence is a critical time for brain development as teenagers prepare for adulthood. Because the brain is still growing and changing during these years, it is especially important to understand how SCD may affect brain health during this stage of life.

Through this study, we are working to better understand how SCD impacts the developing brain. By comparing teenagers with SCD to those without the condition, we hope to uncover important insights that can help improve care and support for young people living with SCD.

Eligibility criteria

In addition to a few criteria that could prevent participation, there are criteria participants must meet including but not limited to the following:

• Must be between the ages of 12-17 years old
• Must be able to understand English
• Must be able to undergo MRI
• Must not have a condition associated with significant intellectual disability or a history of stroke accompanied by neurological signs and symptoms
• Sickle Cell Disease Patients Must have qualifying disease
• Control Group Must have NO family history of sickle cell disease or sickle cell trait
• Since SCD is primarily diagnosed in individuals of African American descent, we will focus recruitment on individuals from the African American community.