Myelin Disorders Biorepository Project (MDBP) at the Biospecimen Exchange for Neurological Disorders (BioSEND)
$143,448U54FY2023NSNIH
Children'S Hosp Of Philadelphia, Philadelphia PA
Investigators
Linked publications & trials
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Abstract
Summary of the Funded Grant or Project The parent RDCRN program is the Global Leukodystrophy Initiative Clinical Trial Network (GLIA-CTN). This program is in its first cycle (entering Y5) and is a collaboration of 8 US leukodystrophy centers. The primary aims focus on harmonization and curation of leukodystrophy natural history data using standard functional and patient reported outcome measures as well as electronic health records. The parent program supports the collection of clinical data related but does not include the proposed biobanking approaches. This application is expected to create the necessary infrastructure to include BioSEND prospectively in future GLIA-CTN activities.
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