The Muscular Dystrophy Surveillance, Tracking and Research Network (MD STARnet) Component C-Enhanced-Dissemination

项目摘要 肌营养不良症是一组罕见的，主要由遗传引起的疾病 进行性肌肉无力和萎缩。这些情况的罕见发生带来了许多挑战 包括缺乏数据、对病因和疾病进展的了解不足、诊断延误 以及缺乏有效的长期治疗，仅举几例。纽约(NY)是有史以来最古老的遗址之一 积极参与病历提取和监控，以及广泛的研究和数据 传播，提高社区对肌营养不良症的认识 监测、跟踪和研究网络(MD STARnet)。该项目将继续进行 使用MD STARnet方法进行监视活动，并使用这些数据来提高对这些 情况，包括这些情况的普遍程度以及健康和诊断方面的挑战 受影响的个人所遇到的。最终目标将是改善这些人的生活。我们 将继续在有针对性的、高影响力的期刊和科学会议上展示我们的发现，并将 继续与各种患者倡导团体合作，以促进提高认识和 更好地通报治疗和护理领域的所有最新事态发展。纽约致力于并敏感地 肌营养不良症患者及其照顾者的需求和护理，并将继续努力 在实现MD STARnet目标方面的研究先驱。

Project Abstract Muscular dystrophies are a group of rare, primarily genetically-inherited, disorders that cause progressive muscle weakness and atrophy. The rare occurrence of these conditions poses many challenges including paucity of data, poor understanding of etiopathology and progression of disease, delays in diagnosis and lack of effective long-term cure, to name a few. New York (NY) is one of the oldest sites to have been actively involved in medical record abstraction and surveillance, along with extensive research and data dissemination, to raise awareness in the community ever since the inception of the Muscular Dystrophy Surveillance, Tracking and Research Network (MD STARnet) in 2002. This project will continue to conduct surveillance activities using MD STARnet methods and use the data to improve the understanding of these conditions, including how common the conditions are and what health and diagnostic challenges are encountered by affected individuals. The ultimate goal would be to improve the lives of these individuals. We will continue to present our findings in targeted, high impact journals and scientific conferences, and will also continue to collaborate with various patient advocacy groups to further the goals of raising awareness and better inform on all recent developments in the field of treatment and care. NY is committed and sensitive to the needs and care of individuals with muscular dystrophy and their caregivers, and will continue to strive to be a research pioneer in achieving the MD STARnet goals.