College of Medicine, Swansea University, Swansea, Wales, UK.
BMC Med Inform Decis Mak. 2012 Jul 18;12:73. doi: 10.1186/1472-6947-12-73.
A UK Register of people with Multiple Sclerosis has been developed to address the need for an increased knowledge-base about MS. The Register is being populated via: a web-based portal; NHS neurology clinical systems; and administrative data sources. The data are de-identified and linked at the individual level. At the outset, it was not known whether people with MS would wish to participate in the UK MS Register by personally contributing their data to the Register via a web-based system. Therefore, the research aim of this work was to build an internet-mounted recruitment and consenting technology for people with Multiple Sclerosis, and to assess its feasibility as a questionnaire delivery platform to contribute data to the UK MS Register, by determining whether the information provided could be used to describe a cohort of people with MS.
The web portal was developed using VB.net and JQuery with a Microsoft SQL 2008 database. UK adults with MS can self-register and enter data about themselves by completing validated questionnaires. Descriptive statistics were used to characterise the respondents.
The web portal was launched in May 2011, and in first three months 7,279 individuals registered on the portal. The ratio of men to women was 1:2.4 (n = 5,899), the mean self-reported age at first symptoms was 33.8 (SD 10.5) years, and at diagnosis 39.6 (SD 10.3) years (n = 4,401). The reported types of MS were: 15% primary progressive, 63% relapsing-remitting, 8% secondary progressive, and 14% unknown (n = 5,400). These characteristics are similar to those of the prevalent MS population. Employment rates, sickness/disability rates, ethnicity and educational qualifications were compared with the general UK population. Information about the respondents' experience of early symptoms and the process of diagnosis, plus living arrangements are also reported.
These initial findings from the MS Register portal demonstrate the feasibility of collecting data about people with MS via a web platform, and show that sufficient information can be gathered to characterise a cohort of people with MS. The innovative design of the UK MS register, bringing together three disparate sources of data, is creating a rich resource for research into this condition.
为了增加多发性硬化症（MS）相关知识基础，开发了英国多发性硬化症患者登记处。该登记处通过以下方式进行填充：基于网络的门户；国家卫生服务（NHS）神经病学临床系统；以及行政数据源。这些数据是经过去识别并以个人为单位进行链接的。起初，尚不清楚 MS 患者是否希望通过通过基于网络的系统将个人数据亲自提供给登记处来参与英国 MS 登记处。因此，这项工作的研究目的是建立一个用于多发性硬化症患者的基于互联网的招募和同意技术，并通过确定所提供的信息是否可用于描述 MS 患者队列来评估其作为问卷交付平台来向英国 MS 登记处提供数据的可行性。
该网络门户是使用 VB.net 和 JQuery 以及 Microsoft SQL 2008 数据库开发的。英国成年人可以自行注册，并通过完成验证后的问卷来输入有关自己的信息。使用描述性统计数据来描述受访者的特征。
网络门户于 2011 年 5 月推出，在头三个月中，有 7,279 人在门户上注册。男女比例为 1:2.4（n=5,899），自首次出现症状的平均年龄为 33.8（SD 10.5）岁，诊断时的平均年龄为 39.6（SD 10.3）岁（n=4,401）。报告的 MS 类型为：15%原发性进行性，63%复发缓解性，8%继发性进行性，14%未知（n=5,400）。这些特征与流行的 MS 人群相似。还比较了就业率，疾病/残疾率，种族和教育程度与英国一般人群的差异。还报告了受访者对早期症状的体验以及诊断过程的信息，以及生活安排。
MS 登记处门户的这些初步发现表明，通过网络平台收集有关 MS 患者的数据是可行的，并且表明可以收集到足够的信息来描述 MS 患者队列。英国 MS 登记处的创新设计，将三个截然不同的数据源整合在一起，为该疾病的研究创造了丰富的资源。
