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

抽象组件C 南卡罗来纳州肌营养不良症监测、跟踪和研究网络 (SC MD STARnet)是州卫生部和 国家的旗舰大学(南卡罗来纳大学，南加州大学)。的首要目标是 该项目的这一组成部分是进行关于健康状况的持续研究， MD患者的卫生保健利用和公共健康影响。我们会估计 患病率、存活率和跟踪临床护理指标，以便了解 确诊的患病率、疾病进展、临床护理和健康状况。这部作品 将产生至少五份同行评审的出版物和五份国家报告，以 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。我们将进行纵向的， 符合条件的MD伴强直性肌营养不良(DM)病例的人群监测， 肩周膜(FSHD)、四肢带(LGMD)、先天性(CMD)、金刚砂 Dreirfuss(EDMD)和远端MD。我们将跟随Duchenne/Becker MD队列 确定患病率和存活率是否有变化，并描述进展和 关心。我们还将开发研究方法和工具，包括调查和 采访，并与其他网站和疾控中心进行研究。在整个资助过程中 周期我们将既领导项目又同时担任辅助分析师 由其他站点或ncbddd牵头的项目。进行研究的目的是 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)。我们会 分析、发表至少5篇稿件，并做至少5次关于 在全国临床医生、医疗保健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.