The Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet) Component A - Core-Current
肌营养不良症监测、跟踪和研究网络 (MD STARnet) 组件 A - 核心当前
基本信息
- 批准号:10437572
- 负责人:
- 金额:$ 41.5万
- 依托单位:
- 依托单位国家:美国
- 项目类别:
- 财政年份:2019
- 资助国家:美国
- 起止时间:2019-09-01 至 2024-08-31
- 项目状态:已结题
- 来源:
- 关键词:
项目摘要
Project Abstract
The muscular dystrophies (MDs) are a heterogeneous group of inherited muscular disorders
characterized by muscle wasting and weakness, and they affect both children and adults. The worldwide
prevalence of inherited neuromuscular diseases estimated in a review study was 28.6/100,000, and
33.3/100,000 if rarer disorders were included. As a group, these disorders cover a considerable proportion of
patients with chronic disease, while recent studies of prevalence of the MDs in the United States are lacking.
For this project, we propose utilizing the experience acquired and methods developed over the past 16 years
to improve on an already established muscular dystrophy surveillance system conducting longitudinal,
population-based surveillance and research of eligible MDs by identifying individuals with eligible MDs, and
conducting longitudinal follow-up and research. We plan to continue our multiple source surveillance efforts, as
they have been effective for the Muscular Dystrophy Surveillance, Tracking and Research Network (MD
STARnet). Further, our proposed use of administrative data will lower costs while enhancing case identification
to yield more complete prevalence rates. Second, we will capitalize on the extensive network of expertise our
site has developed throughout the years to develop a survey that complements the surveillance data and helps
address the critical analytic questions posed by the organizations and patient advocacy groups which
represent individuals affected by the various muscular dystrophies. Lastly, ensuring that patients with rare
diseases get access to the best quality diagnosis and care presents challenges that are best addressed
through collaborations and sharing of resources. By working with stakeholders such as patient organizations,
clinicians, and researchers, and sharing our findings with policy makers and payers, our efforts may be used to
improve systems of care to provide maximal results at minimal costs, including the financial costs to society
and the burden of care for families. We will be partnering with local, state and national programs and patient
advocacy groups during project development and sharing study findings often. Successful collaboration and
wide distribution of study findings will improve the lives of patients and their families, and may lead to additional
clinical studies in order to enhance knowledge about rare diseases.
项目摘要
项目成果
期刊论文数量(0)
专著数量(0)
科研奖励数量(0)
会议论文数量(0)
专利数量(0)
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{{ truncateString('Aida Soim', 18)}}的其他基金
The Muscular Dystrophy Surveillance, Tracking and Research Network (MD STARnet) Component C-Enhanced-Dissemination
肌营养不良症监测、跟踪和研究网络 (MD STARnet) 组件 C 增强传播
- 批准号:
10437577 - 财政年份:2019
- 资助金额:
$ 41.5万 - 项目类别:
The Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet) Component A - Core-Current
肌营养不良症监测、跟踪和研究网络 (MD STARnet) 组件 A - 核心当前
- 批准号:
10220765 - 财政年份:2019
- 资助金额:
$ 41.5万 - 项目类别:
The Muscular Dystrophy Surveillance, Tracking and Research Network (MD STARnet) Component C-Enhanced-Dissemination
肌营养不良症监测、跟踪和研究网络 (MD STARnet) 组件 C 增强传播
- 批准号:
10265309 - 财政年份:2019
- 资助金额:
$ 41.5万 - 项目类别:
The Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet) Component E - Enhanced Abstractor
肌营养不良症监测、跟踪和研究网络 (MD STARnet) 组件 E - 增强抽象器
- 批准号:
10220801 - 财政年份:2019
- 资助金额:
$ 41.5万 - 项目类别:
The Muscular Dystrophy Surveillance, Tracking and Research Network (MD STARnet) Component C-Enhanced-Dissemination
肌营养不良症监测、跟踪和研究网络 (MD STARnet) 组件 C 增强传播
- 批准号:
10655373 - 财政年份:2019
- 资助金额:
$ 41.5万 - 项目类别:
The Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet) Component A - Core-Current
肌营养不良症监测、跟踪和研究网络 (MD STARnet) 组件 A - 核心当前
- 批准号:
10002057 - 财政年份:2019
- 资助金额:
$ 41.5万 - 项目类别:
The Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet) Component E - Enhanced Abstractor
肌营养不良症监测、跟踪和研究网络 (MD STARnet) 组件 E - 增强抽象器
- 批准号:
10002062 - 财政年份:2019
- 资助金额:
$ 41.5万 - 项目类别:
The Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet) Component A - Core-Current
肌营养不良症监测、跟踪和研究网络 (MD STARnet) 组件 A - 核心当前
- 批准号:
10655384 - 财政年份:2019
- 资助金额:
$ 41.5万 - 项目类别:
Comp A-NY State Surveillance and Research of MD and Neuromuscular Disorders
Comp A-纽约州 MD 和神经肌肉疾病的监测和研究
- 批准号:
9319026 - 财政年份:2014
- 资助金额:
$ 41.5万 - 项目类别:
Comp A-NY State Surveillance and Research of MD and Neuromuscular Disorders
Comp A-纽约州 MD 和神经肌肉疾病的监测和研究
- 批准号:
9120236 - 财政年份:2014
- 资助金额:
$ 41.5万 - 项目类别:
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The Muscular Dystrophy Surveillance, Tracking and Research Network (MD STARnet) Component C-Enhanced-Dissemination
肌营养不良症监测、跟踪和研究网络 (MD STARnet) 组件 C 增强传播
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