RT期刊文章SR电子T1的指导方针和成果;标准化照顾杜氏肌萎缩症(P04.087)摩根富林明神经病学神经学乔FD Lippincott Williams &威尔金斯SP 首页P04.087 OP P04.087 VO 78 1补充A1米歇尔史高丽A1瓦莱丽·库克A1布鲁斯·马歇尔A1艾玛Ciafaloni A1托马斯Getchius A1 2012年罗伯特·格里戈斯UL //www.ez-admanager.com/content/78/1_Supplement/P04.087.abstract AB目的:回顾循证指南和共识的治疗杜氏肌肉营养不良症(DMD)和考虑结果如何可以规范和改善病人的护理措施。背景没有循证护理质量指标标准化的结果在肌肉萎缩症协会(MDA)诊所。我们回顾了囊性纤维化(CF)模型标准化CF诊所结果并考虑潜在结果评估医疗服务的质量在DMD诊所。四十年,CF基金会一直保持全国病人注册,获得每一个CF诊所的病人数据。数据,分析年度,在CF可评论的网站。比较个人和国家临床结果挑战诊所改善临床护理。这个数据也为未来提供了潜在的患者群体调查,包括临床试验。设计/方法:我们回顾了:发表声明DMD的治疗的指南和共识;目前从DMD诊所努力得到的结果;标准化的数据获得每年从CF诊所;和方法改善成果发表的注意卫生保健交付的忠诚。Results: There are multiple approaches within the DMD field for surveillance and collection of patient information, including MDSTARNet, Parent Project Muscular Dystrophy, and MDA DMD Clinical Research Network. Based on CF analyzed data, a similar patient registry and nationwide reporting of standard outcomes across MDA clinics appears feasible. Monitoring data including molecular diagnosis, age at loss of ambulation, FVC, and survival, could provide metrics for quality of care.Conclusions: There are logistic challenges to reporting nationwide outcomes; however the influence this model has had on outcomes for CF patients has changed survival. In 2009, the median life expectancy for a patient with CF was 35.9 years, compared to 27 years in 1985. Implementation of clinical data monitoring in MDA clinics will determine if similar benefit accrues in patients with Duchenne Muscular Dystrophy.Disclosure: Dr. Scully has nothing to disclose. Dr. Cwik has nothing to disclose. Dr. Marshall has nothing to disclose. Dr. Ciafaloni has nothing to disclose. Dr. Getchius has nothing to disclose. Dr. Griggs has nothing to disclose.Wednesday, April 25 2012, 07:30 am-12:00 pm