Highlights
- •Validation of a self declared MS Population with a clinically diagnosed one.
- •We analysed the UK MS Register for a number of key characteristics. The internet (n = 11,021) and clinical (n = 3,003) populations were studied for key shared epidemiology. We found them to be closely matched for mean age at diagnosis (clinical = 37.39, portal = 39.28) and gender ratio (female %, portal = 73.1, clinical = 75.2)
- •There is a representative population of people with MS in the online element of the UK MS Register – The MS Register can be utilised as a valid cohort for Clinical and PRO research
- •Kernel Density of the populations for age can be seen in the graphs:
Abstract
The UK Multiple Sclerosis Register (UKMSR) is a large cohort study designed to capture
‘real world’ information about living with multiple sclerosis (MS) in the UK from
diverse sources. The primary source of data is directly from people with Multiple
Sclerosis (pwMS) captured by longitudinal questionnaires via an internet portal. This
population's diagnosis of MS is self-reported and therefore unverified. The second
data source is clinical data which is captured from MS Specialist Treatment centres
across the UK. This includes a clinically confirmed diagnosis of MS (by Macdonald
criteria) for consented patients.
A proportion of the internet population have also been consented at their hospital
making comparisons possible. This dataset is called the ‘linked dataset’. The purpose of this paper is to examine the characteristics of the three datasets:
the self-reported portal data, clinical data and linked data, in order to assess the
validity of the self-reported portal data.
The internet (n = 11,021) and clinical (n = 3,003) populations were studied for key shared characteristics. We found them to
be closely matched for mean age at diagnosis (clinical = 37.39, portal = 39.28) and
gender ratio (female %, portal = 73.1, clinical = 75.2). The Two Sample Kolmogorov-Smirnov
test was for the continuous variables to examine is they were drawn from the same
distribution. The null hypothesis was rejected only for age at diagnosis (D = 0.078, p < 0.01). The populations therefore, were drawn from different distributions, as there
are more patients with relapsing disease in the clinical cohort. In all other analyses
performed, the populations were shown to be drawn from the same distribution.
Our analysis has shown that the UKMSR portal population is highly analogous to the
entirely clinical (validated) population. This supports the validity of the self-reported
diagnosis and therefore that the portal population can be utilised as a viable and
valid cohort of people with Multiple Sclerosis for study.
Graphical abstract
Graphical Abstract
Keywords
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Article info
Publication history
Published online: May 25, 2018
Accepted:
May 22,
2018
Received in revised form:
May 17,
2018
Received:
February 2,
2018
Identification
Copyright
© 2018 Elsevier B.V. All rights reserved.
