Publikationsdatum:
2012-07-19
Beschreibung:
Background: A UK Register of people with Multiple Sclerosis has been developed to address the need foran increased knowledge-base about MS. The Register is being populated via: a web-basedportal; NHS neurology clinical systems; and administrative data sources. The data are deidentifiedand linked at the individual level. At the outset, it was not known whether peoplewith MS would wish to participate in the UK MS Register by personally contributing theirdata to the Register via a web-based system. Therefore, the research aim of this work was tobuild an internet-mounted recruitment and consenting technology for people with MultipleSclerosis, and to assess its feasibility as a questionnaire delivery platform to contribute datato the UK MS Register, by determining whether the information provided could be used todescribe a cohort of people with MS. Methods: The web portal was developed using VB.net and JQuery with a Microsoft SQL 2008database. UK adults with MS can self-register and enter data about themselves by completingvalidated questionnaires. Descriptive statistics were used to characterise the respondents. Results: The web portal was launched in May 2011, and in first three months 7,279 individualsregistered on the portal. The ratio of men to women was 1:2.4 (n = 5,899), the mean selfreportedage 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% relapsingremitting,8% secondary progressive, and 14% unknown (n = 5,400). These characteristics aresimilar 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 ofdiagnosis, plus living arrangements are also reported. Conclusions: These initial findings from the MS Register portal demonstrate the feasibility of collectingdata about people with MS via a web platform, and show that sufficient information can begathered to characterise a cohort of people with MS. The innovative design of the UK MSregister, bringing together three disparate sources of data, is creating a rich resource forresearch into this condition.
Digitale ISSN:
1472-6947
Thema:
Informatik
,
Medizin
Permalink