New York MDSTARnet Feasibility of Expansion to other Muscular Dystrophies

项目摘要 肌营养不良是一组不同类型的遗传性肌肉疾病，其特征是 肌肉萎缩和虚弱，对儿童和成年人都有影响。在世界范围内流行的 在一项回顾研究中估计遗传性神经肌肉疾病的发病率为28.6/10万，如果更罕见的话则为33.3/10万 精神障碍也包括在内。作为一个群体，这些障碍覆盖了相当大比例的慢性病患者 然而，关于肌营养不良症在美国的流行情况，最近的研究还很缺乏。为 两个资金周期，肌营养不良监测、跟踪和研究网络(MD STARnet) 确定并跟踪Duchennne和Becker肌营养不良症(DBMD)患者的健康状况。这 新的资金周期将寻求确定拥有不同肌肉的个人的特征 通过对MD STARnet的扩展和修改来实现营养不良。该项目将评估以下项目的可行性 利用MD STARnet的现有基础设施扩展到基于人口的其他类型的监测 肌肉营养不良症。

Project Abstract 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. For two funding cycles, the Muscular Dystrophy Surveillance, Tracking and Research Network (MD STARnet) has identified and tracked the health of patients with Duchennne and Becker muscular dystrophy (DBMD). This new funding cycle will seek to characterize the population of individuals who have a variety of muscular dystrophies through the expansion and modification of MD STARnet. The project will assess the feasibility of using the existing infrastructure of MD STARnet to expand to population-based surveillance for other types of muscular dystrophy.