Validating the portal population of the United Kingdom Multiple Sclerosis Register.

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 Kasti,C Kipps, G McDonnell, C Owen,O Pearson, W Rashid,H Wilson,D V Ford

Multiple Sclerosis and Related Disorders(2018)

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摘要
•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:
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关键词
Multiple sclerosis,Data linkage,Longitudinal,Research register,Validation,PROMs
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