Preliminary Results of National Amyotrophic Lateral Sclerosis (ALS) Registry Risk Factor Survey Data.
Preliminary Results of National Amyotrophic Lateral Sclerosis (ALS) Registry Risk Factor Survey Data.
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DOI：
10.1371/journal.pone.0153683
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发表时间：
2016
期刊：
影响因子：
3.7
通讯作者：
Horton DK
中科院分区：
文献类型：
--
作者：
Bryan L;Kaye W;Antao V;Mehta P;Muravov O;Horton DK
全国肌萎缩侧索硬化症登记处由两个组成部分组成，以收集肌萎缩侧索硬化症(ALS)病例：国家行政数据库(Medicare、Medicaid、退伍军人健康管理局和退伍军人福利管理局)和由登记处门户网站捕获的自我识别的病例。这项研究使用了国家肌萎缩侧索硬化症注册网站门户网站风险因素调查从2010年10月19日到2013年12月31日收集的数据，描述了美国肌萎缩侧索硬化症成人的自我报告特征。描述国家肌萎缩侧索硬化症注册中心门户网站风险因素调查的结果。通过计算选定的风险因素--吸烟和酒精(非、现在和以前)病史、服兵役和职业史，以及神经退行性疾病的家族病史，如肌萎缩侧索硬化症、阿尔茨海默氏症和/或帕金森氏症，确定了选定的风险因素在成人ALS患者中的流行程度。近一半的调查受访者曾吸烟，而全国成年人的这一比例接近41%。大多数受访者都曾饮酒，这与国家的估计值相当。大多数人都是少量饮酒者。近四分之一的受访者是退伍军人，相比之下，美国全国成年人的这一比例约为9%。大多数受访者是退休或残疾人士。受访者受雇时间最长的行业是专业和科学技术服务业。当评估一级亲属的神经退行性疾病家族史与我们的对照组时，ALS的发生率相似，但帕金森病、阿尔茨海默病和任何神经退行性疾病的发生率较高。据我们所知，国家肌萎缩侧索硬化症注册网络门户网站是关于患有肌萎缩侧索硬化症的成年人的最大、最具地理多样性的风险因素数据收集。各种特征与其他已发表的关于肌萎缩侧索硬化症风险因素的研究一致，并将允许研究人员为未来的研究产生假设。
The National ALS Registry is made up of two components to capture amyotrophic lateral sclerosis (ALS) cases: national administrative databases (Medicare, Medicaid, Veterans Health Administration and Veterans Benefits Administration) and self-identified cases captured by the Registry’s web portal. This study describes self-reported characteristics of U.S. adults with ALS using the data collected by the National ALS Registry web portal risk factor surveys only from October 19, 2010 through December 31, 2013. To describe findings from the National ALS Registry’s web portal risk factor surveys. The prevalence of select risk factors among adults with ALS was determined by calculating the frequencies of select risk factors—smoking and alcohol (non, current and former) histories, military service and occupational history, and family history of neurodegenerative diseases such as ALS, Alzheimer’s and/or Parkinson’s. Nearly half of survey respondents were ever smokers compared with nearly 41% of adults nationally. Most respondents were ever drinkers which is comparable to national estimates. The majority were light drinkers. Nearly one-quarter of survey respondents were veterans compared with roughly 9% of US adults nationally. Most respondents were retired or disabled. The industries in which respondents were employed for the longest time were Professional and Scientific and Technical Services. When family history of neurodegenerative diseases in first degree relatives was evaluated against our comparison group, the rates of ALS were similar, but were higher for Parkinson’s disease, Alzheimer’s disease and any neurodegenerative diseases. The National ALS Registry web portal, to our knowledge, is the largest, most geographically diverse collection of risk factor data about adults living with ALS. Various characteristics were consistent with other published studies on ALS risk factors and will allow researchers to generate hypotheses for future research.