New York MDSTARnet Feasibility of Expansion to other Muscular Dystrophies

纽约 MDSTARnet 扩展到其他肌营养不良症的可行性

基本信息

批准号：
8246049
负责人：
CHARLOTTE Marie DRUSCHEL
金额：
$ 52.5万
依托单位：
CENTER OF ENVIRONMENTAL HEALTH
依托单位国家：
美国
项目类别：
财政年份：
2011
资助国家：
美国
起止时间：
2011-09-01 至 2014-08-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/8246049
关键词：
New York MDSTARnet Feasibility Expansion

项目摘要

DESCRIPTION (provided by the 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 cover 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 dystrophies (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. PUBLIC HEALTH RELEVANCE: Using the infrastructure of the Muscular Dystrophy Surveillance, Tracking and Research Network (MD STARnet), this project will seek to characterize the population of individuals who have a variety of muscular dystrophies through the expansion and modification of MD STARnet.

描述（由申请人提供）：肌肉营养不良是遗传性肌肉疾病的异质群，其特征是肌肉浪费和无力，并且正在影响儿童和成人。如果包括稀有疾病，则在审查研究中估计的遗传神经肌肉疾病的全球患病率为28.6/100,000和33.3/100,000。作为一个组，这些疾病涵盖了相当一部分慢性疾病的患者。但是，最近缺乏关于美国肌肉营养不良症患病率的研究。对于两个资金周期，肌肉营养不良的监测，跟踪和研究网络（MD Starnet）已经鉴定出并跟踪了Duchennne和Becker肌肉营养不良（DBMD）患者的健康状况。这个新的资金周期将试图通过扩大和修改MD Starnet来表征具有各种肌肉营养不良的个体人群。该项目将评估使用MD Starnet现有基础设施以扩展到其他类型肌肉营养不良的基于人群的监视的可行性。公共卫生相关性：利用肌肉营养不良监测，跟踪和研究网络（MD Starnet）的基础设施，该项目将试图通过MD Starnet的扩张和修改来表征具有各种肌肉营养不良的个体人群。