Epub: Ford et al.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. BMC Med Inform Decis Mak. 2012;12(1):73.
BACKGROUND:
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 deidentified 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.
METHODS:
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.
RESULTS: 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.
CONCLUSIONS:
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.
The
study gives a report of some of the analysis of people who have joined the MS register, which aims to increase the knowledge base of UK Msers. It had respondents from 18-95. The study reports that there are more
professional people with MS than the UK average, but only approximately 42% of our potential MS workforce were in employment. This provides new information about the lives of people with MS in the UK from their own perspective but as it is open access so that you can read the whole thing if you want.
If you want to find out more about the MS register or even join it click here