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Muscular Dystrophy Association Neuromuscular Observational Research (MOVR) Data Hub Protocol
The Muscular Dystrophy Association (MDA) wants to collect information about individuals with neuromuscular disease to better understand the disease progression and ultimately improve the medical care, quality of life, and survival of those with neuromuscular disease. To collect this information, MDA has created a data registry called the Neuromuscular Observational Research Data Hub (referred to as the “MOVR Data Hub”). The MOVR Data Hub is a kind of database — a way of collecting and storing information.
Anne Haulman at ahaulman@pennstatehealth.psu.edu or 717-531-0003, ext=289123
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