Comp A-NY State Surveillance and Research of MD and Neuromuscular Disorders

描述(申请人提供)：肌营养不良症是以肌肉萎缩和虚弱为特征的遗传性肌肉疾病的异质性组，影响儿童和成人。一项回顾研究估计，遗传性神经肌肉疾病的全球流行率为28.6/10万，如果包括更罕见的疾病，则为33.3/10万。作为一个群体，这些疾病覆盖了相当大比例的慢性病患者，然而，最近关于美国肌营养不良症患病率的研究还很缺乏。该项目将使用肌肉营养不良监测跟踪和研究网络(MDSTARnet)的方法，对肌营养不良症和神经肌肉疾病患者进行基于人群的监测和纵向跟踪。这将用于公共卫生研究，以检查流行率、存活率、卫生保健服务和护理方面的差距。

DESCRIPTION (provided by applicant): The muscular dystrophies are the heterogeneous group of inherited muscular disorders characterized by muscle wasting and weakness, and are affecting both children and adults. The worldwide prevalence of inherited neuromuscular diseases estimated in a review study was of 28.6/100,000 and 33.3/100,000 if rarer disorders are included. As a group, these disorders, covers a considerable proportion of patients with chronic disease, however, recent studies of prevalence of the muscular dystrophies in the United States are lacking. This project will conduct population-based surveillance and longitudinal follow-up of individuals with muscular dystrophies and neuromuscular disorders using the methods from the Muscular Dystrophy surveillance Tracking and Research Network (MDSTARnet). This will be used for public health research to examine prevalence, survival, health care services and disparities in care.