Comp A-South Carolina MD and Neuromuscular Disorders Surveillance and Res

比较 A-南卡罗来纳州医学博士和神经肌肉疾病监测和研究

• 批准号: 8821171
• 负责人: SUZANNE W MCDERMOTT
• 金额: $ 50万
• 依托单位: SC STATE DEPT/HEALTH/ENVIRONMENTAL CONTR
• 依托单位国家: 美国
• 财政年份: 2014
• 资助国家: 美国
• 起止时间: 2014-09-01 至 2019-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8821171
• 关键词: Comp; South; Carolina; MD; Neuromuscular

DESCRIPTION (provided by applicant): The South Carolina Muscular Dystrophy (MD) Surveillance System (SC MDSS) is a collaboration between the state health department and the state's flagship university and supports each institution's mission to assure and improve the health of South Carolinians. This collaboration has a two-fold purpose: (1) to maintain a dynamic combined active and passive surveillance system for MD, spinal muscular atrophy (SMA) and related conditions, and (2) to develop and manage a data system that allows us to conduct ongoing analyses of health care utilization, costs, and community participation of people with these conditions. The SC MDSS has three specific aims to support this purpose. These include: Specific Aim 1: Conduct population-based surveillance for muscular dystrophies and neuromuscular disorders using methods based on those from the Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet). Specific Aim 2: Analyze surveillance and administrative data to describe health care utilization and costs for each MD type, SMA, and other disorders Specific Aim 3: Develop statistical models to determine associations between specific treatment (medical, pharmaceutical, and related therapies) and specific outcomes (use of mobility aides, residence in home, progression of disability status, etc.) for each type of MD and neuromuscular disorder. To accomplish these aims, the SC MDSS will conduct active surveillance for MD and SMA through medical records abstraction in physician offices, hospitals, and clinics identified through Medicaid, State Health Plan, and physician licensure datasets. Furthermore, the SC MDSS will conduct passive surveillance for MD and SMA through the following linked datasets: hospital discharge data, emergency department data, Medicaid data, state health plan data, vital records data, and birth defects surveillance data. Appropriate epidemiologic and statistical methods will be used to accomplish the aims through the data collected. Health services research frameworks and innovative research methods, such as small area analysis, will be utilized.

描述（由申请人提供）：南卡罗来纳州肌肉营养不良（MD）监视系统（SC MDSS）是州卫生系与州旗舰大学之间的合作，并支持每个机构确保和改善南卡罗来纳州人的健康。这项合作的目的是：（1）为MD，脊柱肌肉萎缩（SMA）（SMA）和相关条件保持动态的组合和被动监视系统，以及（2）开发和管理一个数据系统，使我们能够对患有这些条件的人进行持续的医疗保健利用，成本和社区参与的分析。 SC MDSS具有支持此目的的三个具体目标。其中包括：特定目标1：使用基于肌肉营养不良监测，跟踪和研究网络（MD Starnet）的方法，对肌肉营养不良和神经肌肉疾病进行基于人群的监测。 具体目的2：分析监视和行政数据，以描述每种MD类型，SMA和其他疾病的医疗保健利用和成本特定目的3：开发统计模型，以确定特定治疗（医疗，药物和相关疗法）（医疗，药物和相关疗法）和特定结果（迁移率助手）的使用（对家庭的住所使用，易于疾病的状态等）和NEUR型MD和NEUR neur neur and neur and neur。 为了实现这些目标，SC MDS将通过医师办公室，医院和诊所的医疗记录通过医疗补助，州健康计划和医师许可数据集确定的医师办公室，医院和诊所的医疗记录进行积极监视。此外，SC MDS将通过以下链接数据集对MD和SMA进行被动监视：医院出院数据，急诊室数据，医疗补助数据，州健康计划数据，重要记录数据和生育缺陷的监视数据。将使用适当的流行病学和统计方法通过收集的数据来实现目标。卫生服务研究框架和创新研究方法（例如小面积分析）将被使用。