Seeking children with sickle cell disease under 5 years of age

Researchers at the Kennedy Krieger Institute and the Johns Hopkins Hospital are looking for volunteers to participate in a research study on neurodevelopment in young children with sickle cell disease.

Why is this study important?

Children with sickle cell disease are at risk of experiencing strokes and/or silent strokes, with estimates suggesting that these occur in 39% of individuals with the disorder by the age of 18. Silent strokes can have debilitating effects on the brain's ability to execute complex tasks needed for things like doing well in school. Magnetic resonance imaging (MRI) can identify a silent stroke or other abnormalities and allows for earlier intervention for improved outcomes.

Study details

This study will provide neurological exams, testing and MRIs of the brain over a period of several years.

To participate in the study, your child must:

  • Be under 5 years of age
  • Have a diagnosis of sickle cell disease
  • Be willing to have a neurodevelopmental evaluation

This study involves three study visits involving:

  • History and neurological examination
  • Neuropsychological testing at the beginning and the end of the study
  • MRI of the brain at the beginning and the end of the study
  • Blood sample completed at one of the visits above

After the three visits above, this study may require annual visits until age 6 years including neurological exam and blood sample collection. At their final visit at age 6 years, this study will require neurological examination, neuropsychological testing, MRI of the brain, and blood sample collection.

Compensation for participation is provided.

To Learn More

Call or text: 443-248-6714
Contact us online

Eboni Lance, MD, PhD, Principal Investigator
Protocol: IRB#00096434

Johns Hopkins Medicine
Approved March 20, 2020.

Quote from a family participant

As a parent of a child with sickle cell, we struggle every day with our child’s pain and the difficulties that brings, including the fear of an unknown future.  Participating in this study enables our family to increase medical knowledge and treatment options, not only for our child, but also for future generations.”