Abstract

BackgroundFifteen regional studies published over the last six decades surveying prevalence, mortality and hospital admissions have suggested that Scotland is amongst the highest risk nations for multiple sclerosis (MS) in the world. However, substantial intranational variation in rates (between regions) has been described in numerous countries, including in the only previous Scottish national survey, which used hospital admission data, to address this issue. Against this backdrop, the Scottish Multiple Sclerosis Register (SMSR) was established in 2010 to prospectively collect nationally comprehensive incidence data and to allow for regional comparisons.MethodsHere, we present the SMSR and analyse the variation in crude and age–sex standardized incidence rates, lifetime risk (cumulative incidence), and the sex distribution of cases and rates, between the 14 administrative Health Boards or regions of Scotland: 01 January 2010 to 31 December 2017.ResultsThe overall incidence rate for Scotland was 8.76/100,000 person-years (standardized: 8.54). Regional incidence rates varied significantly—up to threefold—between Health Boards (p < 1 × 10–13). The national female-to-male sex ratio was 2.3:1, but this too varied regionally (outlier regions result in a range from 1.0 to 4.2:1). Lifetime risk ranged from 19.9/1000 for females in Orkney (58.98°N) to 1.6/1000 for males in the Borders (55.60°N). Comparison with a previous national survey suggests that these differences are longstanding. In 6 of 14 regions the lifetime risk for women exceeds 1%.ConclusionsThis study introduces a national incidence register: a valuable research tool and the result of substantial public investment. The wide variation in incidence rates and sex ratios between regions, in a relatively homogenous population, raises questions for future study.

Highlights

  • Broad consensus exists for genetic susceptibility interacting with potent environmental risk factors in the pathogenesis of multiple sclerosis (MS) [1,2,3]

  • The majority of Scotland’s population lives in the “central belt” which includes the two largest cities of Glasgow and Edinburgh. 98% of the Scottish population lives on the mainland and there are some 790 islands, 94 permanently inhabited which are broadly separated into four main island groups: The Outer Hebrides, The Inner Hebrides, Orkney and Shetland

  • We considered whether ascertainment discrepancies, arising from systematic differences in time from first symptoms to diagnosis, might have contributed to these results and we hypothesized that, if so, this might be reflected in differences in distribution of age at diagnosis (Fig. 4)

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Summary

Introduction

Broad consensus exists for genetic susceptibility interacting with potent environmental risk factors in the pathogenesis of multiple sclerosis (MS) [1,2,3]. Fifteen regional studies published over the last six decades surveying prevalence, mortality and hospital admissions have suggested that Scotland is amongst the highest risk nations for multiple sclerosis (MS) in the world. Substantial intranational variation in rates (between regions) has been described in numerous countries, including in the only previous Scottish national survey, which used hospital admission data, to address this issue. Against this backdrop, the Scottish Multiple Sclerosis Register (SMSR) was established in 2010 to prospectively collect nationally comprehensive incidence data and to allow for regional comparisons. The wide variation in incidence rates and sex ratios between regions, in a relatively homogenous population, raises questions for future study

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