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AxD Outcomes
A thorough review of outcome measures that assess disease progression has not been established for any of the subcategories of Alexander disease.
Related PI: Amy Waldman, MD, MSCE
Related Conditions: Alexander Disease
The Myelin Disorders Biorepository Project (MDBP)
This study involves the collection of medical information and samples from people with a confirmed or suspected leukodystrophy or related disorder affecting the white matter of the brain, as well as "healthy controls" who are not known to be affected by one of these disorders.
Related PI: Adeline L. Vanderver, MD
Related Conditions: Leukodystrophies, Leukodystrophy, Biorepository, Pediatric Neurology, Neurological and Neuromuscular , Genetic Disease, Genetic Disorders, Rare Genetic Disorders, Pediatric Genetic Disease, Aicardi Goutieres Syndrome, TUBB4A, Metachromatic Leukodystrophy, Adrenoleukodystrophy, Leukoencephalopathies, Leukoencephalopathy, Biobank, Biobanking, H-ABC, Alexander Disease, Krabbe Disease, Whole Genome Sequencing, Exome Sequencing, Whole Exome Sequencing, Next Generation DNA/RNA Sequencing, Next-generation Sequencing, Rare Disorder Natural History Studies, Rare Disease