The Leukodystrophy Center at Children’s Hospital of Philadelphia currently has two ongoing research studies exploring the natural history of Alexander disease (AxD). Individuals of any age diagnosed with Alexander disease are eligible to participate. The data obtained from both of these studies will be used for the design of future clinical trials.

• Study #1 (Outcome Metrics in Alexander Disease): This study requires a visit to the Children’s Hospital of Philadelphia. Participants will undergo Physical Therapy, Occupational Therapy, Speech and Language, Observational Swallow and Neurocognitive evaluations, paid for by the study. This study also includes an optional Magnetic Resonance Imaging (MRI) and Lumbar Puncture (LP) component. These assessments typically take place over 2-3 days. To help offset travel costs, participants may be eligible for a travel stipend.