The South Carolina Muscular Dystrophy Surveillance, Tracking, and Research Network (SC MD STARnet)- Component C

抽象成分C 南卡罗来纳州肌营养不良监测、跟踪和研究网络 (SC MD STARnet）是州卫生部与 州的旗舰大学（南卡罗来纳州，南加州大学）。的总体目标 该项目的这一组成部分是对健康状况进行持续研究， 卫生保健利用和MD患者的公共卫生影响。我们估计 患病率，生存率，并跟踪护理的临床指标，以了解 诊断患病率、疾病进展、临床护理和健康状况。这项工作 将产生至少五份同行审查的出版物和五份国家报告， 专业协会、国家会议或其他会议，包括 专业人士和MD患者的倡导者。我们将进行纵向调查， 对符合条件的强直性肌营养不良（DM）MD病例进行基于人群的监测， 筋膜肩胛肱骨（FSHD）、肢带（LGMD）、先天性（CMD）、金刚砂- Dreirfuss（EDMD）和远端MD。我们将跟踪Duchenne/Becker MD队列， 确定患病率和生存率是否发生变化，并描述进展情况， 在乎我们还将开发研究方法和工具，包括调查和 采访，并与其他网站和CDC进行研究。在整个融资 在一个周期内，我们将领导项目，同时担任二级分析师， 由其他站点或NCBDDD领导的项目。研究的目的是， 通过监测确定的亚群是为了解决知识差距（例如， 生活质量、怀孕和生育问题以及自我护理问题等）。我们将 分析，发表至少5篇手稿，并至少做5次演讲。 在全国临床医生会议上的监测和研究结果， 提供者、倡导者和其他相关方。

Abstract Component C South Carolina Muscular Dystrophy Surveillance, Tracking, and Research Network (SC MD STARnet) is a collaboration between the state health department and the state’s flagship university (University of South Carolina, USC). The overarching aim of this component of the project is to conduct ongoing research about of the health status, health care utilization, and public health impact of people with MD. We will estimate prevalence, survival, and track clinical indicators of care in order to understand diagnosed prevalence, disease progression, clinical care, and health status. This work will result in at least five peer reviewed publications and five national presentations to professional societies, national conferences, or other meetings that include professionals and advocates for people with MD. We will conduct longitudinal, population-based surveillance on eligible MD cases with Myotonic Dystrophy (DM), Fascioscapulohumeral (FSHD), Limb-girdle (LGMD), congenital (CMD), Emery- Dreirfuss (EDMD) and distal MD. We will follow the Duchenne/Becker MD cohort to determine if there are changes in prevalence and survival and to describe progress and care. We will also develop research methods and tools, including surveys and interviews, and conduct research with other sites and CDC. Throughout the funding cycle we will both lead projects and simultaneously act as secondary analysts on projects lead by other sites or NCBDDD. The aim of conducting research with the subpopulations identified through surveillance is to address knowledge gaps (eg. Quality of life, pregnancy and fertility issues, and self-care issues, etc.). We will analyze, publish at least 5 manuscripts, and make at least 5 presentations about the surveillance and research findings at national meetings of clinicians, health care providers, advocates, and other interested parties.