%0 Journal Article
%T The feasibility of collecting information from people with Multiple Sclerosis for the UK MS Register via a web portal: characterising a cohort of people with MS
%A David V Ford
%A Kerina H Jones
%A Rod M Middleton
%A Hazel Lockhart-Jones
%A Inocencio DC Maramba
%A Gareth J Noble
%A Lisa A Osborne
%A Ronan A Lyons
%J BMC Medical Informatics and Decision Making
%D 2012
%I BioMed Central
%R 10.1186/1472-6947-12-73
%X 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.
%K Multiple Sclerosis
%K Disease register
%K Data linkage
%U http://www.biomedcentral.com/1472-6947/12/73/abstract