Surveillance of Muscular Dystrophies

    From US Department of Health & Human Services: Centers for Disease Control & Prevention

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    Type of Support

    Overview

    The grant aims to conduct longitudinal population-based surveillance of select muscular dystrophies, including Duchenne MD (DMD), Becker MD (BMD), myotonic dystrophy (DM), facioscapulohumeral muscular dystrophy (FSHD), limb-girdle MD (LGMD), Congenital MD (CMD), Emery-Dreifuss MD (EDMD), and distal MD. Its objectives are to describe key health outcomes and health inequities among individuals with these conditions to identify opportunities for improving their health. The grant will fund projects that utilize multiple data sources for creating a comprehensive cohort encompassing either an entire state or a specific region within a state. The surveillance will involve tracking individuals with muscular dystrophy through various means, including clinic visits and administrative data. There are three components to the project: Component A, which focuses on core surveillance and dissemination; Component B, which enhances activities related to abstractor training and data quality; and Component C, an optional component contingent upon funding availability.

    Eligibility

    Organization's Location
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    Program Location
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    Submission

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