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）：南卡罗来纳州肌营养不良 (MD) 监测系统 (SC MDSS) 是州卫生部门和该州旗舰大学之间的合作项目，支持每个机构确保和改善南卡罗来纳州人民健康的使命。这项合作有两个目的：(1) 维护 MD、脊髓性肌萎缩症 (SMA) 及相关病症的动态组合主动和被动监测系统；(2) 开发和管理数据系统，使我们能够对患有这些疾病的人的医疗保健利用、成本和社区参与进行持续分析。 SC MDSS 有三个具体目标来支持这一目标。其中包括： 具体目标 1：使用基于肌营养不良症监测、跟踪和研究网络 (MD STARnet) 的方法，对肌营养不良症和神经肌肉疾病进行基于人群的监测。 具体目标 2：分析监测和管理数据，以描述每种 MD 类型、SMA 和其他疾病的医疗保健利用率和成本 具体目标 3：开发统计模型，以确定特定治疗（医疗、药物和相关疗法）与特定治疗之间的关联每种类型的 MD 和神经肌肉疾病的结果（移动辅助设备的使用、在家中居住、残疾状况的进展等）。 为了实现这些目标，SC MDSS 将通过医疗补助、州健康计划和医生执照数据集确定的医生办公室、医院和诊所的医疗记录提取，对 MD 和 SMA 进行主动监测。此外，SC MDSS 将通过以下链接数据集对 MD 和 SMA 进行被动监测：出院数据、急诊科数据、医疗补助数据、州健康计划数据、生命记录数据和出生缺陷监测数据。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。将利用卫生服务研究框架和创新研究方法，例如小区域分析。