TY -非盟的霜,Jeana AU -奥肯,莎莉AU -沃恩,盖AU -海伍德,詹姆斯AU -威克斯,保罗PY - 2011 DA - 2011/01/21 TI - Patient-reported结果作为证据的来源标示外处方:数据分析从PatientsLikeMe乔- J地中海互联网Res SP - e6六世- 13 - 1千瓦标示外KW -互联网KW -研究KW -病人平台KW -方法KW -在线社区AB -背景:评估一个新的使用现有的药物可以是昂贵和费时的。提供者和患者往往必须依靠自己的个人经验来为临床实践提供信息，这只能产生轶事和非结构化的数据。虽然学术主导的临床试验偶尔会进行，以测试专利过期药物的超说明书使用，但这种情况相对罕见。在这项工作中，我们探索了一个以患者为中心的在线研究平台如何通过有效地聚合结构化的患者报告数据来补充传统的试验，从而更丰富地了解医疗产品上市后的情况。PatientsLikeMe是一个面向患者、研究人员和护理人员(目前在11个基于病情的社区拥有82,000名成员)的工具，可帮助用户做出治疗决策、控制症状并改善结果。成员输入人口统计信息、纵向治疗、症状、结果数据和治疗评估。这些反映为纵向健康概况和汇总报告。在过去的3年里，患者进入了数千种医疗产品的治疗历史和评估。与传统试验相比，这些数据可能有助于更有效地评估某些治疗方法的有效性和安全性，并在更长的时间内进行评估。目的:本研究的目的是检查阿米替林和莫达非尼-常用超说明书用药的说明病例。 Methods: We analyzed patient-reported treatment histories and drug evaluations for each drug, examining prevalence, treatment purpose, and evaluations of effectiveness, side effects, and burden. Results: There were 1948 treatment histories for modafinil and 1394 treatment reports for amitriptyline reported across five PatientsLikeMe communities (multiple sclerosis, Parkinson's disease, mood conditions, fibromyalgia/chronic fatigue syndrome, and amyotrophic lateral sclerosis). In these reports, the majority of members reported taking the drug for off-label uses. Only 34 of the 1755 (1%) reporting purpose used modafinil for an approved purpose (narcolepsy or sleep apnea). Only 104 out of 1197 members (9%) reported taking amitriptyline for its approved indication, depression. Members taking amitriptyline for off-label purposes rated the drug as more effective than those who were taking it for its approved indication. While dry mouth is a commonly reported side effect of amitriptyline for most patients, 88 of 220 (40%) of people with amyotrophic lateral sclerosis on the drug reported taking advantage of this side effect to treat their symptom of excess saliva. Conclusions: Patient-reported outcomes, like those entered within PatientsLikeMe, offer a unique real-time approach to understand utilization and performance of treatments across many conditions. These patient-reported data can provide a new source of evidence about secondary uses and potentially identify targets for treatments to be studied systematically in traditional efficacy trials. SN - 1438-8871 UR - //www.mybigtv.com/2011/1/e6/ UR - https://doi.org/10.2196/jmir.1643 UR - http://www.ncbi.nlm.nih.gov/pubmed/21252034 DO - 10.2196/jmir.1643 ID - info:doi/10.2196/jmir.1643 ER -