Evaluation of Outcome Metrics in Alexander Disease

Recruiting Observational Study
Alexander Disease
No Study Drug Researchers observe your health over time — no experimental treatment is given.
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At a Glance
Sex
Any
Study type
Observational
Participants needed
200 (estimated)
Sponsor
Children's Hospital of Philadelphia · Other
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About This Trial
The purpose of this study is to define the natural history of Alexander Disease, a leukodystrophy that causes neurological dysfunction. Investigators will obtain clinical outcome assessments to measure how the disease affects a patient's gross motor, fine motor, speech and language function, swallowing, and quality of life. Specimens are collected to measure glial fibrillary acidic protein (GFAP) …
Trial Locations
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Eligibility Criteria
Inclusion Criteria: * Diagnosed with Alexander Disease Exclusion Criteria: * Other Leukodystrophies will not be enrolled
Contacts

Amy Waldman, MD

215-590-1719

CONTACT

Geraldine Liu, MA

267-425-2063

liug@chop.edu

CONTACT