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

描述（由申请人提供）：肌营养不良症是一组以肌肉萎缩和无力为特征的遗传性肌肉疾病，儿童和成人均可感染。一项回顾性研究估计，遗传性神经肌肉疾病的全球患病率为28.6/100,000，如果包括罕见疾病，则为33.3/100,000。作为一个群体，这些疾病涵盖了相当大比例的慢性疾病患者，然而，最近对美国肌营养不良症患病率的研究缺乏。该项目将使用肌肉萎缩症监测跟踪和研究网络（MDSTARnet）的方法，对肌肉萎缩症和神经肌肉疾病患者进行基于人群的监测和纵向随访。这将用于公共卫生研究，以检查患病率、存活率、保健服务和保健方面的差距。

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.