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. 2019 Mar;30(2):230-233.
doi: 10.1097/EDE.0000000000000948.

Validation of the Swedish Multiple Sclerosis Register: Further Improving a Resource for Pharmacoepidemiologic Evaluations

Peter Alping  1 , Fredrik Piehl, Annette Langer-Gould  2 , Thomas Frisell  3 ; COMBAT-MS Study Group
Affiliations

Validation of the Swedish Multiple Sclerosis Register: Further Improving a Resource for Pharmacoepidemiologic Evaluations

Peter Alping et al. Epidemiology. 2019 Mar.

Abstract

The Swedish Multiple Sclerosis Register is a national register monitoring treatment and clinical course for all Swedish multiple sclerosis (MS) patients, with high coverage and close integration with the clinic. Despite its great value for epidemiologic research, it has not previously been validated. In this brief report, we summarize a large validation of >3,000 patients in the register using clinical chart review in the context of the COMBAT-MS study. While further improving the data quality for a central cohort of patients available for future epidemiologic research, this study also allowed us to estimate the accuracy and completeness of the register data.

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Figures

FIGURE
FIGURE
Proportion of therapy starts with an observation of EDSS (left) and MRI (right), within −180 to +30 days (EDSS) and −90 to +30 days (MRI) of therapy start, stratified by therapy. EDSS, Expanded Disability Status Scale; FGL, fingolimod; INJ, injectables; MRI, magnetic resonance imaging; NTZ, natalizumab; other, all other therapies; RTX, rituximab.
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