Our latest paper looks at how people on the website report their MS compared to the supplied clinical information – the answer is very accurately! Well done everyone!
A scientific criticism of the MS Register is how can we guarantee that our participants who are on website answering questionnaires, have a confirmed diagnosis of MS from a Neurologist? While people’s answers have been used countless times for internal and guest (other Universities/researchers)research and published in many journals, there is always the question – How representative of the UK MS population is the MS Register online population?
Luckily we work with over 43 NHS hospitals across the UK who consent patients to the participate in the clinical side of the MS Register and then provide us with information about their MS.
We looked at characteristics from this population, and characteristics from the online population and analysed the results. for example, 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). For those patients who are both consented at a hospital and also answer questionnaires online, we were also able to look at what the clinical staff have recorded and what patients have told us on the MS Register -these matched well.
Conclusions of the Research
Self-reported information from participants on the UK MS Register looks very similar to a clinically supplied population.This means that the MS Register can be utilised as a representative group for Research.
Thank you everyone and well done!