Parkin Kullmann Jane Alana, Hayes Susan, Wang Min-Xia, Pamphlett Roger
The University of Sydney, Camperdown NSW, Australia.
JMIR Res Protoc. 2015 Aug 3;4(3):e96. doi: 10.2196/resprot.4840.
Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease with a typical survival of three to five years. Epidemiological studies using paper-based questionnaires in individual countries or continents have failed to find widely accepted risk factors for the disease. The advantages of online versus paper-based questionnaires have been extensively reviewed, but few online epidemiological studies into human neurodegenerative diseases have so far been undertaken.
To design a Web-based questionnaire to identify environmental risk factors for ALS and enable international comparisons of these risk factors.
A Web-based epidemiological questionnaire for ALS has been developed based on experience gained from administering a previous continent-wide paper-based questionnaire for this disease. New and modified questions have been added from our previous paper-based questionnaire, from literature searches, and from validated ALS questionnaires supplied by other investigators. New criteria to allow the separation of familial and sporadic ALS cases have been included. The questionnaire addresses many risk factors that have already been proposed for ALS, as well as a number that have not yet been rigorously examined. To encourage participation, responses are collected anonymously and no personally identifiable information is requested. The survey is being translated into a number of languages which will allow many people around the world to read and answer it in their own language.
After the questionnaire had been online for 4 months, it had 379 respondents compared to only 46 respondents for the same initial period using a paper-based questionnaire. The average age of the first 379 web questionnaire respondents was 54 years compared to the average age of 60 years for the first 379 paper questionnaire respondents. The questionnaire is soon to be promoted in a number of countries through ALS associations and disease registries.
Web-based questionnaires are a time- and resource-efficient method for performing large epidemiological studies of neurodegenerative diseases such as ALS. The ability to compare risk factors between different countries using the same analysis tool will be of particular value for finding robust risk factors that underlie ALS.
肌萎缩侧索硬化症（ALS）是一种进行性神经退行性疾病，典型生存期为三到五年。在个别国家或大洲使用纸质问卷进行的流行病学研究未能找到被广泛认可的该疾病风险因素。在线问卷与纸质问卷的优势已得到广泛综述，但迄今为止，针对人类神经退行性疾病的在线流行病学研究开展较少。
设计一份基于网络的问卷，以识别ALS的环境风险因素，并对这些风险因素进行国际比较。
基于此前在整个大洲范围内针对该疾病使用纸质问卷所获得的经验，开发了一份基于网络的ALS流行病学问卷。从我们之前的纸质问卷、文献检索以及其他研究者提供的经过验证的ALS问卷中添加了新问题并进行了修改。纳入了用于区分家族性和散发性ALS病例的新标准。该问卷涉及了许多已被提出的ALS风险因素，以及一些尚未经过严格检验的因素。为鼓励参与，问卷采用匿名方式收集回复，不要求提供任何可识别个人身份的信息。该调查正在被翻译成多种语言，这将使世界各地的许多人能够用自己的语言阅读并回答。
问卷上线4个月后，有379名受访者，而在同一初始阶段使用纸质问卷时只有46名受访者。前379名网络问卷受访者的平均年龄为54岁，而前379名纸质问卷受访者的平均年龄为60岁。该问卷很快将通过ALS协会和疾病登记机构在多个国家进行推广。
基于网络的问卷是对ALS等神经退行性疾病进行大型流行病学研究的一种省时且高效的资源利用方法。使用相同分析工具比较不同国家风险因素的能力对于找到构成ALS基础的可靠风险因素将具有特别价值。
