A thorough review of outcome measures that assess disease progression has not been established for any of the subcategories of Alexander disease. These results will be crucial to our understanding of disease presentation and progression. Providing this information about the pathophysiology will allow for effective development of clinical trials to test therapies and the future use of neuroprotective agents in children.

The purpose of this study is to look at the Sodium Magnetic Resonance Imaging (MRI) findings in children with brain tumors and healthy children. An MRI is a machine which takes pictures of the brain. The type of MRI image in this study is a new type that is not yet FDA approved and the study is looking to see if the new type of MRI image is useful in looking at sodium in the brain and brain tumors. Sodium MRI (also known as 23Na-MRI) is a useful non-invasive imaging technique to assess biochemical and physiologic changes in tissues, e.g. integrity of cells and tissue viability. Sodium MRI has been beneficial in the evaluation of several neurological disorders including acute ischemic strokes, multiple sclerosis, amyotrophic lateral sclerosis, migraines, and multiple tumor types, including tumors outside of the central nervous system.

We want to study brain responses during simulated driving and are currently looking for participants 12-17 years old or those who have had brain surgery. To do so, we'll have eligible participants come to CHOP for some non-invasive (safe) brain scans and drive using a simulator. If you are interested in learning more about the study, please contact Victoria Kaufman at kaufmanv@chop.edu or 267-425-4150.