Validating the portal population of the United Kingdom Multiple Sclerosis Register

Publication date: August 2018Source: Multiple Sclerosis and Related Disorders, Volume 24Author(s): R.M. Middleton, W.J. Rodgers, J. Chataway, K. Schmierer, D. Rog, I. Galea, A. Akbari, K. Tuite-Dalton, H. Lockhart-Jones, D. Griffiths, D.G. Noble, K.H. Jones, A. Al-Din, M. Craner, N. Evangelou, P. Harman, T. Harrower, J. Hobart, H. Husseyin, M. KastiAbstractThe 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 mat...
Source: Multiple Sclerosis and Related Disorders - Category: Neurology Source Type: research