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

描述（由申请人提供）：南卡罗来纳州肌肉萎缩症（MD）监测系统（SC MDSS）是州卫生部门和州旗舰大学之间的合作，支持每个机构确保和改善南卡罗来纳州人健康的使命。这项合作有两个目的：(1)维护MD、脊髓性肌萎缩症（SMA）及相关疾病的动态主动和被动联合监测系统；(2)开发和管理一个数据系统，使我们能够对这些疾病患者的医疗保健利用、成本和社区参与进行持续分析。为支持这一目标，SC MDSS有三个具体目标。具体目标1：使用基于肌肉萎缩症监测、跟踪和研究网络（MD STARnet）的方法，对肌肉萎缩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和成本。具体目标3：开发统计模型，以确定每种MD和神经肌肉疾病的特定治疗（医疗、药物和相关疗法）和特定结果（使用行动辅助工具、居住在家中、残疾状态进展等）之间的关联。为了实现这些目标，SC MDSS将通过提取医生办公室、医院和诊所的医疗记录，通过医疗补助、州健康计划和医生执照数据集对MD和SMA进行积极监测。此外，SC MDSS将通过以下相关数据集对MD和SMA进行被动监测：医院出院数据、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。将采用适当的流行病学和统计方法，通过收集的数据实现这些目标。将利用保健服务研究框架和创新研究方法，如小区域分析。

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.